Health Promotion and Prevention Programmes in Practice: How Patients' Health Practices are Rationalised, Reconceptualised and Reorganised [1. Aufl.] 9783839413029

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Thomas Mathar, Yvonne J.F.M. Jansen (eds.) Health Promotion and Prevention Programmes in Practice

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Editorial Since the late 1970s, empirical science studies have developed into a key field of research at the intersection of science, technology and society. This field merges a repertoire of theories and methods stemming primarily from cultural anthropology, sociology, linguistics and history. Its main characteristic is the detailed analysis of scientific practices and epistemic cultures and how these become entangled with public discourses and everyday life. This focus tries to reveal specific, local configurations and their epistemological as well as social consequences. Beyond a mere deconstruction, science studies are constantly looking to engage with the fields in which they do their work. The goal of this book series is to offer to scholars a German and English speaking Forum that • develops inter- and trans-disciplinary bodies of knowledge in the areas of medicine and the life sciences and makes these nationally and internationally available; • supports young scientists through opening up a new field of work which runs across existing disciplinary structures; • encourages the formation of tandems through co-authorship. In particular, it supports, evaluates and comments on collaborative projects with colleagues from the natural and engineering sciences. The series is directed towards scholars and students from both the empirical science/social studies and the natural sciences and medicine. The series is edited by Martin Döring and Jörg Niewöhner. Scientific Advisors: Regine Kollek (University of Hamburg, GER), Brigitte Nerlich (University of Nottingham, GBR), Stefan Beck (Humboldt University, GER), John Law (University of Lancaster, GBR), Thomas Lemke (University of Frankfurt, GER), Paul Martin (University of Nottingham, GBR), and Allan Young (McGill University Montreal, CAN).

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Thomas Mathar, Yvonne J.F.M. Jansen (eds.)

Health Promotion and Prevention Programmes in Practice How Patients’ Health Practices are Rationalised, Reconceptualised and Reorganised

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Gefördert durch Mittel des Bundesministeriums für Bildung und Forschung im Programm »Geisteswissenschaften im gesellschaftlichen Dialog«, Sektion Anthropologie.

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de

© 2010 transcript Verlag, Bielefeld All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publisher. Cover layout: Kordula Röckenhaus, Bielefeld Typeset by: Thomas Mathar, Yvonne J.F.M. Jansen Printed by: Majuskel Medienproduktion GmbH, Wetzlar ISBN 978-3-8376-1302-5

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CONTENTS

Acknowledgements

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Introduction: Health Promotion and Prevention Programmes in Practice TOM MATHAR, YVONNE J.F.M JANSEN

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Prologue: Preventing Alzheimer’s Disease: Health, Ageing and Justice TIAGO MOREIRA Will the Entire Population be Overweight by 2230? Common Sense, Scientific Consensus and the ›Obesity Epidemic‹ ISABEL FLETCHER Prevention as a Side Effect? Distributing Trial Participants in a Pharmaceutical Drug Trial PETRA JONVALLEN Configuring Professional Identity – a Way to Renegotiate Good Care KATIA DUPRET SØNDERGAARD

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Preferences versus Capabilities: How to Improve the (Future) Quality of Life for Women with Abled and Disabled Children MARLI HUIJER The Taming of Chance and the Actual Practice of Prevention; Rationalised Prevention and ›the Social‹ YVONNE J.F.M. JANSEN Body-Identity Trajectories of Preventive.Selves++ TOM MATHAR Epilogue: Translating Experience into Biomedical Assemblages. Observations on European Forms of (Imagined) Participatory Agency in Healthcare STEFAN BECK List of Contributors

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Ac k now le dgeme nt s This bulk of the chapters presented in this book are substantially revised versions of papers that were first presented at the 4S/EASST Conference »Acting with science, technology and medicine«, in the session »Health Promotion and Prevention Programmes in Practice«, in Rotterdam in August 2008. We owe our thanks to the many people who helped us realise this book. As all the chapters of this book are based on empirical studies, on behalf of all authors, we would like to express our gratitude to the informants (patients, clinicians, trialists, nurses, and many others) who were willing to take part in the empirical studies and who were thus prepared to be observed and comfortable in answering sometimes seemingly odd questions. We also like to thank all of the participants at the conference and especially the audience of our session for asking extremely helpful questions and giving very insightful comments indeed. This made organising and participating in the session a very stimulating and constructive learning experience. We further gratefully acknowledge the intense support from the editors of this series Jörg Niewöhner and Martin Döring. Their comments and suggestions made us help to make the book what it is today. We are also very grateful to the German Ministry of Education and Research (Bundesministerium für Bildung und Forschung), which gave the financial support necessary for realising this project. And last, but not least, we – as editors – like to express our gratitude to all the contributors to this book, for making working on it a very constructive and cooperative process. A spe-

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ACKNOWLEDGEMENTS

cial thanks should go to Isabel Fletcher, our only English native speaker contributing here, for proof reading some of the chapters. Thomas Mathar and Yvonne J.F.M. Jansen November 2009

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Introduc tion: Health Promotion and Prevention Progra mmes in Practice TOM MATHAR AND YVONNE J.F.M. JANSEN

In the last ten years or so, prevention and health promotion have gained attention in the policy domain throughout European countries. The »National Service Framework for Coronary Disease: Winning the War on Heart Disease« from England’s Department of Health or a prevention law planned by German policy makers that would force health-insurance companies to invest more money in prevention are both examples of this trend. This emphasis on prevention can also be observed outside of Europe: the recently elected US president Barack Obama, for example, repeatedly stated that disease prevention and health promotion should be made a cornerstone of any healthcare reform. This book begins by asking why such attention is currently focused on disease prevention and health promotion. For years public health experts have argued for more attention to prevention and health promotion as the public’s health is best served through prevention and health promotion. But for a long time this message has remained unheard. Why is it that initiatives aimed at avoiding the development of diseases or activities meant to prevent the emergence of certain symptoms are now taken up by policymakers? We contend that there are manifold

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plausible explanations for this development and all reflect changes in societal thinking or an emerging shift in the overall discourse on public health in policy, media and everyday life. One of these explanations is that prevention and health promotion can be regarded as an economic necessity. Ballooning costs in many Western healthcare systems are often seen as caused by a specific demographic development: the number of elderly people in most Western societies is increasing and so is their rate of morbidity. The demand for health care in general, and particularly care specific to the elderly (de Hollander, Hoeymans et al. 2006), is therefore expected to grow. Similarly and related, the rise in the number of people with chronic illnesses is statistically significant and also understood to be a major financial burden on healthcare systems. The increased emphasis on prevention and health promotion, with their goals of achieving healthier lifestyles, can be seen as a consequence of the overall aim to keep healthcare systems affordable (Hunter 2003). Another explanation of the trend towards prevention and health promotion is the explosion in epidemiological knowledge of certain diseases and chronic illnesses in the past decades (May 2009), which has gradually entered the policy arena. Public health, one of the disciplines that produces and operates with this kind of knowledge, according to Coughlin and others (Rychetnik, Frommer et al. 2002; Coughlin 2006) what we – as a society – do collectively to assure the conditions in which people can be healthy. As it is primarily concerned with the health of the entire population, rather than the health of individuals, its features are among others the collection and use of epidemiological data, population surveillance and other forms of empirical quantitative assessment (Childress, Faden et al. 2002). On the basis of statistical and epidemiological evidence, public health experts create prevention and health promotion programmes and public health policies that are directed at specific groups in society and aim to promote specific lifestyle activities among these groups (Childress, R.R. et al. 2002; Shim 2005; Coughlin 2006). Public health involves various strategies to encourage healthier behaviour amongst populations. These strategies range from bans (e.g. on smoking in public spaces in many European countries), changes in the availability of public goods (e.g. fluoridation of drinking water in the US), informa-

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INTRODUCTION

tion campaigns (e.g. on cholesterol and healthy eating habits in the Netherlands), to financial incentives (e.g. discounts on health insurance payments). Although a very invasive and restrictive public health measure, smoking bans are a popular example of the operation of epidemiological knowledge and public health policy. Smoking bans in workplaces and/or in other public spaces are enacted in order to protect people from effects of environmental tobacco smoke. This widely established policy follows epidemiological studies that reveal a strong correlation between passive smoking and lung cancer mortality: in other words, passive smokers have a higher risk of dying from lung cancer and this risk increases with an increasing exposure to environmental tobacco smoke. In this example, as well as in other prevention programmes, epidemiology’s and public health’s specific concept of risk is crucial: making claims on risk usually means drawing on a broad set of data and probabilities on that will define what illnesses will occur in society. It also involves making claims about the economic burden deriving from high rates of these illnesses (Carter 1995). Such an understanding of risk therefore allows for populations to be screened and diseases to be systematically detected in advance of their onset (Armstrong 1995; Howson 1998). In other words, information on health risks makes it possible to select ›at risk‹ populations with the aim to improve their health status and – at the same time – reduce the financial burden on society. Currently, since cardiovascular diseases are considered to be important public health problems, a large number of prevention programmes target groups that are ›at risk‹ of suffering from these diseases, i.e. those affecting the heart or blood vessels such as atherosclerosis, angina pectoris, congestive heart failure, or coronary artery disease. Although there is still debate about the importance of particular risk factors and their thresholds, it is widely accepted that in order to prevent such diseases, some of their risk factors can be modified by healthy eating, physical exercise, and the avoidance of alcohol and smoking. Since cardiovascular disease prevention programmes have recently been expanded, and sometimes re-labelled, in order to tackle what is perceived by many as an ›epidemic‹ of obesity (James, Learch et al. 2001), four chapters of this book focus on these conditions. (James, Leach et al. 2001,)

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A third and final explanation for the trend towards prevention and health promotion is the emergence of a new moral regime, which permeates current prevention and health promotion initiatives. Many sociologists studying prevention and health promotion have indicated that the most distinctive feature of today’s prevention and health promotion programmes is their emphasis on the facilitation of healthy lives (Bunton, Nettleton et al. 1995a; Burrows, Nettleton et al. 1995). In order to have individuals change their lifestyles, prevention and health promotion not only address individuals directly, they also encourage the creation and implementation of ›healthy public policies‹ on the basis of socio-economic structures (Burrows, Nettleton et al. 1995). As a result, these sociologists have argued that prevention and health promotion programmes reflect as well as foster changes in the patterning of solidarity and the distribution of responsibility. Thus, they implicitly carry a strong moral programme towards an individualisation of health care responsibility. Others have argued that a new discourse is unfolding in which the autonomous individual is taken out of the equation and health is understood foremost as the State’s responsibility. They argue that, despite all prevention efforts, individuals (i.e. the rediscovered lower classes) are not capable of changing their lives. Because of this, they claim, the State has to – by modifying their physical environments (e.g. stairs instead of escalators and childhood obesity prevention programmes) – direct individuals in such a way that good health is not a matter of choice (Niewöhner and Kontopodis forthcoming). Even though these three explanations of the growing emphasis on prevention and health promotion have been presented as independent processes, they can also be regarded as interrelated. In his historical analysis on the relationship of politics and statistics, Desrosières (2002) has shown that scientific evidence is not only a tool for proof, but also a tool for governance, coordinating many social activities and legitimising specific political activities. In this sense, the aforementioned use of epidemiological and economic data for prevention and health promotion initiatives and public health policies not only indicate financial and health problems. They also indicate and motivate new values and moral judgements in society. The reader

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INTRODUCTION

will encounter this thesis explicitly and implicitly at many points in this book. Sometimes it is argued that a neoliberal moral system is at stake (Rose 1996), because a neoliberal concept of how social problems should be solved can be observed: many prevention programmes are not based on the assumption that diseases should be fought by collective responsibility, but by the activities and duties of individuals. The many prevention programmes aimed at altering the individual’s lifestyle fit with this thesis. In many prevention programmes, people are expected to actively manage their health with lifestyle modifications, self-surveillance and bodily restraint – these are then considered the morally right thing to do. They are expected to become what has been described elsewhere as preventive selves (Niewöhner 2007). If (good) health is to be a matter of self-control, it is implied that one is responsible for future illnesses, if one does not use the scientific health risk information provided to change one’s lifestyle (Lupton 1993b; Lupton 1993a; Lupton 1997; Bodenheimer, Lorig et al. 2002). In conclusion, the trend towards prevention and health promotion observable in most Western societies can be interpreted as a change in the state-subject relationship. It can be interpreted as governments’ need to redistribute its responsibilities for the allocation of scarce resources in systems of social provision. However, with the perceived overextension of these responsibilities for the state and the subsequent rise in government expenditures, governments now tend to reallocate the responsibility for health and healthcare back to citizens with the aim to keep healthcare systems stable. This new state-subject relationship can be seen as a consequence of new reflexive practices (Collier and Ong 2005) and, thus, as a consequence of certain economic trends related to a demographic transitions, as a consequence of the explosion of epidemiological and public health knowledge of »chronic« diseases and as a consequence of the previously outlined new moral regime. Importantly, these trends are not separate from each other but interwoven and interrelated.

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S t u d yi n g p r a c t i c e The ultimate aim of this book is to study health promotion and prevention programmes in practice. The aforementioned macrosocial trends might explain a shift towards prevention and health promotion. They have been investigated in discourse and policy analyses; however, these trends are also manifested in specific patterns of practice on a micro-level. The scope of this edited volume consists in investigating these changing patterns of practice that are situated in specific contexts, discourses and actor-networks. It looks at the micro-level, at the specific contexts within which prevention is being done, framed or produced. By highlighting the two words »in practice« this book asks: how do certain prevention programmes work? How are they being conducted? It is not so much concerned with prevention as a rationale or as a culture but as something in action; it is concerned with doing prevention. In this sense, this book follows what has been called a ›practice turn‹ (Savigny, Schatzki et al. 2000): »Although practice theory does not constitute a unified corpus, most of these scholars are joined in the belief that practical regimes constitute the horizon within which unreflexive reactions, actions, utterance, linguistic acts, behaviours, and routine conduct acquire meaning. Practice consists of all these elements but cannot be reduced to any of them. Practices and the complex nexuses of local and global interdependencies which they tend to form […] constitute therefore a phenomenon that needs to be studied in its own right.« (Nicolini 2007: 892)

By studying the actual practice of administering health promotion and prevention programmes to individual patients – the micro-level – this book aims to provide a different perspective than that of economists and public health experts. Doing prevention demonstrates how individuals are (re)configured as, say, ›patients at risk‹, as future-oriented selves or as test subjects in clinical trials. It further shows how health care professionals are reconfigured through the tensions between treatment ideals and their local enactment and how relevant categories such as obesity are never stable entities but rather fluid and shifting objects. In fact, by focussing on doing prevention, the book aims

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INTRODUCTION

to demonstrate the multiplicity of these programmes. It presents partialities, instabilities and situatedness. In this book, the in-depth analyses of prevention and health promotion initiatives therefore focus on the relational character of these initiatives. It is precisely this focus on practice and the processualrelational perspective which makes this book a matter of science & technology studies (STS), or what this book series – VerKoerperungen/MatteRealities – terms empirical science studies. Empirical science studies is a relatively young field of research and has become institutionalised to some degree in Anglo-American countries. From its beginning in the 1970s, it has taken medicine as a field of investigation, although it has made different contributions than, for example, medical sociologists. Even though there is no clear distinction between the disciplines of empirical science studies, medical sociology and medical anthropology, there are some gradual differences that can be outlined: for example, medical sociologists are mostly concerned with the social dimensions around health and illness. They analyse how chronic diseases are being managed at home, what effect a disease can have on individual’s identities, how migrants interpret Western biomedical concepts, etc. By highlighting these aspects, medical sociologists and anthropologists have often criticised the medical system for being paternalistic or objectifying. They find fault with the powerful ›medical gaze‹ (Foucault 1973) that suppresses either lay beliefs or nurses’ perspectives, and have also criticised other interactional asymmetries and conflicts that may occur where science meets society. Very often, medical sociologists have – for many reasons – placed themselves in opposition to medicine without necessarily engaging with medicine. In contrast, scholars from empirical science studies and medical anthropology, focussing on practice and interested in medicine, health and illness, have not necessarily been less critical of medicine; however, they have tried to overcome certain approaches of earlier scholars by taking the internal dynamics and logics of medicine in practice seriously. For this they engage in what they term symmetrical approaches. In the next section we discuss how the of a »symmetrical approach« has been fiercely debated by two different schools: the Strong

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Programme and actor-network theory. However, both highlight the importance of taking seriously what scientists do, and how and why they do it. A current example for a symmetrical approach is Stefan Timmerman’s and Steven Haas’ argument for a »sociology of disease« that overcomes the approach of »sociologists of health and illness [who] have argued for an expansion of social factors in health but have ignored diseases that form the basis of much of the interventions« (Timmermans and Haas 2008: 671). Similarly, in his epilogue to this book, Stefan Beck lays out the importance of symmetrical approaches in a perspective he terms »relational anthropology«. Put simply, these approaches have in common that they aim to engage with health care professionals by taking what they believe to be relevant into account (e.g. medical facts such as biomarkers or metabolic systems). The contributors of this book all met for the first time at the annual meeting of the European Association for the Study of Science and Technology in Rotterdam in August, 2008, entitled »Acting with science, technology and medicine«. For the organisers of this conference, the notion of ›acting with‹ was crucial and its importance was explained in the call for papers of this conference: »This meeting responds to some remarkable and interesting changes in the concerns of STS research. STS-approaches are no longer only relevant for understanding the production of science, technology and innovation; they also are relevant for understanding the co-production of science and technology with policy, democracy, law, and the organization of health care, among other major institutional matters. Similarly STS researchers have become increasingly involved with practices of technology development, policymaking, legal decisionmaking and governance in different fields, such as science and technology policy, environmental regulation, and health care. The balance between observation and participation seems to have changed in these consequential practices of ›acting with‹.«

In the context of the »health promotion and prevention programmes in practice« session – and in the context of this book – that meant that an explicit aim was not to stand apart and evaluate a certain initiative from a distance; rather, this book tries to come closer to the medicine/epidemiology/economy

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INTRODUCTION

platform (Keating and Cambrosio 2003) that has emerged in recent times and is consequential in peoples’ everyday lives. The aim of this book is threefold: Which knowledge? This question is not only concerned with historical shifts in the medical conceptualisations underlying certain health promotion and prevention programmes. It is concerned with the question of which actors’ social worlds, or »going concerns« (Hughes 1971) come together when creating knowledge about certain diseases. Again, the focus on the practice of doing knowledge production not only demonstrates discursive figures but also highlights which interactions between which regimes of practice are taking place. Which social practice? Another focus of this book is directed towards the people for whom certain prevention programmes are designed. Here, the question is not only how people make sense of epidemiological data given to them, but also what the practical consequences of this data are, either in terms of peoples’ identities and self-understandings or their interactions with health professionals. Following Latour (Latour 1994) and other scholars from actor-network theory, this question is concerned with the mediation and translation of scientific knowledge and everyday practices. Which enactments? A focus on enactments of prevention allows us to capture the diverse, ontologically different elements that come together in this field. Importantly, this very often means paying special attention to the materialities (i.e. technologies, artefacts and bodies) involved in both knowledge production and application. Studying enactments, as will be elaborated below, is an important perspective when studying the practice of administering health promotion and prevention programmes: it provides insights into who is actually doing prevention, as well as how different actors/actants determine and (re)configure other actors, routines, activities and identities respectively. Importantly, studying enactments also brings together knowledge production and everyday life as interwoven rather than understanding them as clearly separated realms. The overall aim of this book, then, is to contribute reflexive knowledge to the field of prevention and health promotion in the way Ulrich Beck (1992) has suggested. By presenting empirical examples of actual practices of prevention and health promo-

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tion, this book tries to present a behind the scenes view of and on prevention and health promotion rhetoric and practice that otherwise would have remained invisible. By explaining the invisible and unreflected practices of prevention and health promotion initiatives, this book provides insights that can inform the work of prevention and health promotion practitioners, public health policy-makers and prevention and health promotion researchers. With this book, a modest attempt is made to urge the field of prevention and health promotion to be (more) reflexive of developments in society and the form this takes in actual prevention and health promotion initiatives. It thus attempts not only to formulate a critique of prevention and health promotion, but wants to show the diverse reflexive practices interacting with it and reflect upon the consequences on the micro-level.

D o i n g p r e ve n t i o n : o v e r v i ew o f t h e b o o k The chapters in this book address the practice of prevention and health promotion empirically, albeit from different perspectives within empirical science studies. The first chapter explores how obesity has been framed and reframed during the last six decades. Isabel Fletcher, who conducted this historical study by analysing policy documents, scientific papers, and technical reports released by the WHO, dedicates her attention to a phenomenon that has gradually become more problematic since World War II. Statistics show rising obesity rates in almost all Western countries; her title reflects this by citing the concern of an American scientist that the entire population might be obese by 2230. In fact, obesity is currently being regarded as one of the major risk-factors for cardiovascular disease, diabetes mellitus type 2, obstructive sleep apnea, and osteoarthritis (Poirier, Giles et al. 2006). Many health promotion and prevention programmes therefore aim at reducing obesity rates, and they do this especially by promoting a »healthier« lifestyle: one involving physical activity and balanced nutrition. In her chapter, Isabel Fletcher shows that not only in these programmes but in the category »obesity« itself there is a rationale, or what she calls – referring to Thomas Kuhn (1970)

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INTRODUCTION

– a paradigm which has shifted over the past decades. For example, prevention programmes promoting a healthier lifestyle actually presume that too much weight can actually be remedied by individuals themselves. As she demonstrates, this paradigm has, however, been heavily questioned within the sciences that also acknowledge, say, societal factors related to obesity. As do many studies using a symmetrical approach suggested by scholars from the Strong Programme (Bloor 1976b), Fletcher shows that what counts as obesity is always the product of activities and practices of social actors who can never be said to be »modest witnesses« (Haraway 1997) of truth. In recent shifts in science and technology studies, it is precisely this concept of symmetry that has been challenged by other sociologists. In what can be called ›radical symmetry‹, scholars working with actor-network theory (Callon 1986; Latour and Woolgar 1986) argue for a systematic acknowledgement of the non-human (materials, technologies, objects). By drawing on the achievements of the Strong Programme, actornetwork theory’s enlargement into a »generalised symmetry« calls for, to put it abstractly, a symmetric analysis of semiotics and materiality. It is not only important to focus on the social construction of, say, scientific facts, but also the materials involved in this process. An important actor-network study, one that is also cited frequently in certain chapters of this book, is Annemarie Mol’s »the body multiple« (2002b) which is concerned with atherosclerosis, a chronic syndrome affecting arterial blood vessels. Mol looks at various observable practices and studies how atherosclerosis is treated at different sites in a certain hospital (e.g. by different medical experts) and which technologies are involved in this (x-rays, microscopes, etc.). By taking practices as the paramount unit of analysis and hereby considering what both actors and actants do, she lucidly demonstrates that in this hospital, multiple atherosclerosis’ coexist. Studying such kinds of multiplicity is also at the heart of the chapters two and three. Petra Jonvallen is concerned with contract research organisations whose business is to recruit what are called »naïve« and »newly debuted« participants for randomised controlled trials in which drugs on obesity and diabetes are tested. In her ethnographic study, however, Jonvallen is not analysing the multiple ontologies of obesity and diabetes.

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Rather, she is studying the multiple categories of trial participants. This perspective enables her to reflect on the current tendency of clinical trials to shift from a research programme to a prevention programme on behalf of public health care practitioners. Her title »prevention as a side effect« captures this rather ironic, though not unproblematic trend. Importantly, besides discussing this empirical finding, Jonvallen enlarges Mol’s approach by reflecting on structural elements in fluid spaces, something Mol and many other studies in science and technology studies have not done. Jonvallen argues that this enlargement enables us to also reflect on structural transformations of healthcare systems and ask whether the trends observed are beneficial to the healthcare system’s benefitors, i.e. its patients. Katia Dupret Søndergaard uses actor-network theory inspired theses and concepts when studying ›Open Dialogue‹, a treatment approach and prevention programme used in psychiatry primarily for patients with schizophrenia. In her chapter, this alternative to traditional, state-funded psychiatric approaches is not the object of a critique: ›Open Dialogue‹ reflects many social scientists’ critiques of medicine and psychiatry in that it applies strategies meant to avoid paternalism or an objectification of the patient, thereby establishing a patientcentred practice. It does not assume any hierarchies between the different actors involved in the treatment process. In this sense, ›Open Dialogue‹ can be understood as a post-modern treatment approach. However, by drawing on what Latour (1993) calls an a-modern approach, Dupret Søndergaard demonstrates that the application of the ideals of ›Open Dialogue‹ is quite difficult to achieve in practice. In seemingly banal situations, psychiatric staff try to engage in ›Open Dialogue‹ ideals and these ideals are challenged and transformed. In a thick description of three empirical episodes, explicitly taking non-human actants into account, she shows what post-modern criticism should acknowledge when designing prevention programmes and treatment approaches. Chapter four by Marli Huijer also deals with the problem of choice and patient empowerment though from a different angle. Her focus is on the temporal presuppositions underlying the preventive character of prenatal genetic and chromosomal testing or, put differently, how time concepts become inscribed

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INTRODUCTION

in prevention programmes. Her starting point is the finding that in contemporary prevention programmes not only people’s health is taken into account but also their future quality of life. The protection of an individual’s future health is balanced against the impact this protection has on his or her current quality of life. Huijer postulates that it is difficult if not impossible for individual women to know what impact the care of a child with or without congenital defects can have on their future quality of life. The more philosophical issue is how to view women’s quality of life with a child in a temporal perspective. In line with Martha Nussbaum’s version of the capabilities approach, she argues that women’s future quality of life is better served by prevention and health promotion programmes that guarantee fair equality of opportunity to all newborns, whatever their abilities and needs, than by programmes that fulfil women’s present-day preferences for potential but as yet unknown futures. While Huijer’s chapter is discussing her point from a philosophical point of view, Yvonne J.F.M. Jansen is giving an empirical example of how patients receive agency and how they co-constitute the shape of prevention programmes in practice. In chapter five, Jansen argues that prevention and health promotion programmes have a double obligation. On the one hand, she argues – referring to (Hacking 1990) – that prevention and health promotion have a rationalistic and deterministic character, that submits individuals to an increasing control and intervention upon their health and presumes the relation between health risk information and the actual health of individuals to be causal. On the other hand, by using concepts from the sociology of technology on the mutual shaping of technology and society for the analysis of her ethnographic material, she shows that the practice of prevention programmes is shaped by how health care professionals relate prevention regimes to individual patients, to their daily circumstances and how this is shaped by the extent of patients’ participation and conformation to such regimes. Jansen therefore argues that with lifestyles and health behaviours being the targets, contemporary prevention and health promotion are no longer solely about transferring the responsibility for good health to patients,

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it is also about accepting ›the social‹ as basic ingredient of prevention and health promotion practices. The importance of acknowledging patients’ perspectives is also emphasised in Tom Mathar’s chapter. Mathar studied patients with heart failure who are enrolled in a prevention programme using information- and communication technologies to monitor patients’ risk parameters. In his analysis, he also pays special attention to the non-human which, in his case, means the reflection of numbers and indicators that patients encounter when, for example, taking their blood-pressure. With his focus on patient-number/indicator interactions, he begins to synthesise some of the aforementioned concepts and theses by positioning himself as part of recent interactionist science and technology studies (Clarke and Star 2008). This means that he follows a line of reasoning which, on the one hand, reflects the epistemological roots of philosophic pragmatism and symbolic interactionism while, on the other, inserting some of the major theses and concepts of actor-network theory. Importantly, interactionist science and technology studies are less concerned with multiple materialities (such as the chapters of Jonvallen and Dupret Søndergaard) as with multiple perspectives (Mol 1999). This focus leads him to the construction of two types of patient profiles which he labels the preventive self and the »preventive.self++«. He argues that it is especially the latter that are a challenge in current health policies since their practices are not congruent with the concept of patienthood that is inscribed in many prevention programmes. While the first six chapters are all concerned with microperspectives and micro-politics, the prologue and epilogue to this book deal with broader questions clustering around health promotion and prevention programmes. The starting point of Tiago Moreira’s prologue is a reflection of the theses of philosopher Norman Daniels, who argued for a right to health care. He was specifically concerned with age discrimination and intergenerational justice and highlighted the importance of reflecting about the relationship between the ›performance of justice‹ and the ›knowledge of ageing‹. Moreira takes up these arguments. However, on the basis of his empirical data he shows that this relationship is differently enacted in various sets of arrangements. Using Mild Cognitive Impairment (MCI) as an

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example – a diagnostic category that tries to capture a diffuse stage between cognitive ageing and dementia – he discusses how the concept of MCI configures times (the plural is crucial), and how these result in divergent ideals of justice. When presenting MCI first as a ›risk factor‹ (for persons who might suffer from Alzheimer Disease), secondly as a an ›economic object‹ (i.e. as something that must be tackled for financial reasons), and thirdly as a ›label‹ (i.e. a category that does not necessarily bring bad, but might bring dangerous consequences for those classified as cognitively impaired) he shows how the category of MCI is differently entangled within various attributes of current strategies to organise health care. Insofar, Moreira gives a concrete example of how the multiple, above-mentioned new reflexive practices present themselves in research, policy and management. Importantly, these different forms of knowing the process of ageing inherently transport ethical assumptions because they make claims on what ›normal ageing‹ actually is. Moreira wonders if all these ethical regimes really do justice to the elderly and gives a striking example of what might be taken into consideration when organising alternative, ›just‹ allocations of resources. In his epilogue, Stefan Beck follows Clarke et al. in investigating patients’ perspectives on what can be called the process of »biomedicalisation« – i.e. the process in which medicalisation is increasingly accompanied by consumerism, developments in biotechnology, and managed care markets. Reflecting on empirical data gathered from an EU-wide research project, he argues that sufferers’ experience can make valuable contributions to current healthcare systems. Many health care systems do not incorporate patients’ experiences; working with individual activists or patient groups enables people working in healthcare to better meet the sick persons’ needs. Beck realises that this sort of reflective knowledge can be »budgeted« by decision-makers to, in his words, let volunteers »fill the gap« between medical knowledge and everyday life. However, these volunteers (as both individuals and collectives) engage in important relational work while translating the patients’ experience into the biomedical dispositif or assemblage. Not only do they challenge clear-cut distinctions between perception and knowledge, experience and expertise, cognition and interest and, by exten-

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sion, the categorical division between the ontological zones of medicine and social sciences. Their work also contradicts the notion of information and knowledge underlying most prevention programmes. Beck concludes that just such a relational approach might allow what could be called reflexive prevention, health promotion and health policy.

References Armstrong, David (1995). »The rise of surveillance medicine« Sociology of Health & Illness 17: 393-404. Beck, Ulrich (1992). Risk Society; Towards a New Modernity. London/Thousand Oak/New Delhi, Sage Publications. Bloor, David (1976). The Strong Programme in the Sociology of Scientific Knowledge. The Strong Programme in the Sociology of Scientific Knowledge. David Bloor. Chicago, Routledge: 323. Bodenheimer, Thomas, Kate Lorig, Halsted Holman and Kevin Grumbach (2002). »Patient Self-management of Chronic Disease in Primary Care« Journal of American Medical Association 288(19): 2469-2475. Burrows, R., S. Nettleton and R. Bunton (1995). Sociology and health promotion: health, risk, and consumption under late modernism. The sociology of health promotion; Critical analyses of consumption, lifestyle and risk. R. Bunton, S. Nettleton and R. Burrows. London/New York, Routledge: 1-9. Callon, Michel (1986). Some Elements of a sociology of translation. Domestication of the Scallops and the Fishermen of St.Brieuc Bay. Power, Action and Belief: A New Sociology of Knowledge? John Law and Paul Kegan. London, Routledge: 196-229. Carter, S. (1995). Boundaries of danger and uncertainty: an analysis of the technological culture of risk assessment. Medicine, Health and Risk; Sociological Approaches. J. Gabe. Oxford/Cambridge, MA, Blackwell Publishers Ltd.: 133-150. Childress, James E., Ruth R. Faden, Ruth D. Gaare, Lawrence O. Gostin, Jeffrey Kahn, Richard J. Bonnie, Nancy E. Kass, Anna C. Mastroianni, Jonathan D. Moreno and Phillip Nie-

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burg (2002). »Public Health Ethics: Mapping the Terrain« Joumal of Law, Medicine & Ethics 30 170-178. Clarke, Adele E. and Susan Leigh Star (2008). The social worlds framework: A theory/methods package. The Handbook of Science and Technology Studies. Edward Hackett, Olga Amsterdamska, Michael Lynch and Judy Wajcman. Cambridge, Massachusetts, The MIT Press. Collier, Stephen J. and Aihwa Ong (2005). Global Assemblages, Anthropological Problems. Global Assemblages. Technology, Politics, and Ethics as Anthropological Problems. Stephen J. Collier Aihwa Ong. Malden & Oxford Blackwell Publishing: 3– 21. Coughlin, S.S. (2006) »Ethical issues in epidemiologic research and public health practice« Emerging Themes in Epidemiology 3, 16 de Hollander, Guus, Nancy Hoeymans, Johan Melse, Hans van Oers and Johan Polder (2006). Zorg voor gezondheid; Volksgezondheid Toekomst Verkenning 2006, Rijksinstituut voor Volksgezondheid en Milieu. Desrosières, Alain (2002). The Politics of Large Numbers: A History of Statistical Reasoning. Cambridge, MA, Harvard University Press. Foucault, Michel (1973). The birth of the clinic; an archaeology of medical perception. New York, Pantheon Books. Hacking, Ian (1990). The Taming of Chance. Cambridge, Cambridge University Press. Haraway, Donna Jeanne (1997). Modest Witness @ Second Millennium. Female Man © Meets OncoMouse TM: feminism and technoscience. New York, Routledge. Howson, Alexandra (1998). »Surveillance, knowledge and risk: the embodied experience of cervical screening « Health 2(2): 195-215. Hughes, Everett C. (1971). The sociological eye; selected papers. Chicago, Aldine-Atherton. Hunter, David J. (2003). Public Health Policy. Cambridge, Polity Press. James, Philip.T., Rachel Leach, Eleni Kalamara and Maryam Shayeghi (2001). »The Worldwide Obesity Epidemic« Obesity 9: 228-233.

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Keating, Peter and Alberto: Cambrosio (2003). Biomedical Platforms. Realigning the Normal and the Pathological in LateTwentieth-Century Medicine. Cambridge, MA, The MIT Press. Kuhn, Thomas S. (1970). The structure of scientific revolutions. Chicago, University of Chicago Press. Latour, Bruno (1993). We have never been modern. New York, Harvester Wheatsheaf. Latour, Bruno (1994). »On Technical Mediation: Philosophy, Sociology Genealogy« Common Knowledge 3: 29-64. Latour, Bruno and Steve Woolgar (1986). Laboratory Life: The construction of scientific facts. Princeton, NJ, Princeton University Press. Lupton, Deborah (1993a). »The Construction of Patienthood in Medical Advertising« International Journal of Health Services 23(4). Lupton, Deborah (1993b). »Risk as Moral Danger: the Social and Political Functions of Risk Discourse in Public Health« International Journal of Health Services 23(3): 425-435. Lupton, Deborah (1997). »Consumerism, reflexivity and the medical encounter« Social Science & Medicine 45(3): 373-381. May, Carl R. (forthcoming). Mundane Medicine, Therapeutic Relation-ships, and the Clinical Encounter: Current and Future Agendas for Sociology. Handbook of the Sociologcy of Health, Illness, & Healing: A Blueprint for the 21st Century. Bernice Pescosolido, Jack K. Martin, Jane D. McLeod and Anne Roggers. New York, Springer. Mol, Annemarie (1999). Ontological Politics. A word and some questions. Actor Network Theory and After. John Law and John Hassard. Oxford, Blackwell Publishing. Mol, Annemarie (2002). The Body Multiple. Ontology in Medical Practice. Durham, Duke University Press. Nicolini, Davide (2007). »Stretching out and expanding work practices in time and space: The case of telemedicine« Human Relations 60(6): 889-920. Niewöhner, Jörg (2007). »Forschungsschwerpunkt: Präventives Selbst – Herz-Kreislauf Erkrankungen im Jahr der Geisteswissenschaften« Humboldt-Spektrum 1: 34-37. Niewöhner, Jörg, Kontopodis, Michalis (forthcoming): Life in the setting. Producing and practicing cardiovascular prevention between labs and kindergartens. La vie en sociétés.

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Biomédecine, Politique, Sciences Sociales. Janina Kehr, Jörg Niewöhner and Joelle Vally. Paris, Découverte. Poirier, Paul, Thomas D. Giles, George A. Bray, Hong Yuling, Judith S. Stern, F. Xavier Pi-Sunyer and Robert H. Eckel (2006). »Obesity and Cardiovascular Disease: Pathophysiology, Evaluation, and Effect of Weight Loss « Arteriosclerosis, Thrombosis, and Vascular Biology 26: 968-976. Rose, Nikolas (1996). Governing ›advanced‹ liberal democracies. Foucault and political reason – Liberalism, neo-liberalism and rationalities of government. Andrew Barry, Thomas Osborne and Nikolas Rose. London, Routledge: 37-64. Rychetnik, Lucie, Michael Frommer, Penelope Hawe and Alan Shiell (2002). »Criteria for evaluating evidence on public health interventions« Journal of Epidemiology and Community Health 56: 119-127. Savigny, Eike von, Theodore R. Schatzki and Karin D. KnorrCetina (2000). The practice turn in contemporary theory. London, Routledge. Shim, Janet K. (2005). »Constructing ›Race‹ Across the Science– Lay Divide: Racial Formation in the Epidemiology and Experience of Cardiovascular Disease« Social Studies of Science 35(3): 405-436. Timmermans, Stefan and Steven Haas (2008). »Towards a sociology of disease« Sociology of Health & Illness 30(5): 659-676.

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Prologue : Preventing Al zheimer’s Disea se : Health, Ageing and Justic e TIAGO MOREIRA

In the past decade or so, the field of dementia research, practice and policy has experienced a shift towards prevention rather than cure. This was due to the intersection of four interrelated processes: a) biomolecular models of Alzheimer’s disease and related dementias suggest that key pathological changes preceded the clinical presentation of the disease; b) an increased attention to the epidemiology of dementia, particularly through longitudinal studies within the field; c) a growing public awareness of the illness supported by an alignment between the medical profession, health care policy makers and advocacy groups; and d) the establishment of a clinical and therapeutic infrastructure of care in most advanced economies fostered help seeking behaviour in persons with milder symptoms of cognitive decline. These changes can be seen as part of a wider focus on health maintenance across fields within health care that has emerged in the last decades of the last century, which entails not only constructing an understanding of the biomolecular, individual and social dynamics that lead to illness, but also a reliance on preventative therapeutic strategies, health promotion programmes and health consumerism. These in turn are sustained by

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enhanced epidemiological surveillance (screening, etc.) and regulate access to therapies and programmes through the identification of risk factors or states (Armstrong 1995). These changes are also closely related to changes in the economic, social and political networks which embed Alzheimer’s disease in contemporary public space. There, however, matters have been less straightforward and the proposal to implement dementia prevention programmes have been met with scepticism and critique (Brayne, Gao et al. 2006). One example of this is the debate around Mild Cognitive Impairment (MCI), a diagnostic term coined by Petersen (2003) to describe a transitional stage between normal cognition and dementia aimed at identifying individuals at risk of dementia (2003). This new diagnostic entity has been the focus of a lively controversy, with critics questioning the validity, predictability and diagnostic utility of the category as it sets arbitrary limits to cognitive performances in relation to age. Other critics are unsure about the discrepancy between the ability to categorise individuals and the absence of any real therapeutic solution in the futures that the category predict for them. The category according to some has also the potential of stigmatising ›eccentric individuals‹. MCI is a useful case study because, as I argued in a previous paper (Moreira 2007c), it allows to observe and understand how disease prevention categories are evaluated by different actors, using different forms of collective qualification. My suggestion was that there were five different forms of collective qualification that mediated the implementation of prevention programmes in contemporary societies: a) as a problem of ›survival‹ within a limited temporal horizon for individuals inserted in cohorts; b) as a problem of ›survival gain‹ associated with lowering the prevalence of particular conditions; c) as a problem in making the risk threshold or category work in the clinical encounter; d) as a label imposed on the individual; e) as an ›inner experience‹ (Moreira 2007: 8). Through the exploration of how these modes of qualculation (Cochoy 2002) interacted in the public space, I aimed to demonstrate that »public controversies, rather than the ›risky self‹, are the key mechanism of reflexivity« (Moreira 2007c: 6) and of articulation of the social link in contemporary technological societies.

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In this prologue to this book, I want to explore an important aspect of this multiplicity of forms of qualculation of health: how they relate to different articulations of justice. It is well established within the research area of the social determinants of health that inequality and weak social bonds are correlated with lower levels of health attainment unevenly distributed across social groups (Marmot 2003). The ability to achieve and maintain health appears to be intimately related to how just individuals feel the society they live in is (Wilkinson 2005). Indeed, political philosopher Norman Daniels has argued that health is of special moral importance because of how it impacts on opportunities available to individuals and that ›just societies‹ should seek to flatten differences across determinants of health as much as possible (Daniels 2008). Drawing on Rawls’ theory of justice as fairness, Daniels is concerned with establishing an ›opportunity framework‹ that will support the creation of institutions that will solve the disputes over resources within society. In so doing, Daniels consistently returns to the need for the institutions builder to be modelled after Rawls’ian idealtype agents: those that decide on the principles and structure of institutions should be ›behind a veil of ignorance‹ which deprives them of all knowledge of their personal characteristics and social and historical circumstances. Of particular concern to Daniels is the issue of age discrimination and intergenerational justice (Daniels 2008). His argument is that institutions should be designed to provide goods (opportunities) through all stages of their life, taking into account that »they must live through those stages and accept the tradeoffs involved across the lifespan« (Daniels 2009: 39). Daniels’ concern with intergenerational justice is significant because it reveals the tensions encapsulated within providing an adequate articulation between health, ageing and justice and expressed in the wider societal debate between ›fair innings‹ arguments that would intensify the opportunities in early stages of life and ›healthy ageing‹ proposals that emphasise the continuing participation of older people in all arenas of life supported by health. However, as Austin has argued, ›successful aging‹ may not be possible for all individuals due to social factors – blocked opportunities – in the life course (Austin 1991). In this respect, Daniels answer appears to be that al-

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though opportunities should not be constrained to the earlier part of the life cycle, it is reasonable to expect that previous opportunities, age-related changes in function and self-perception will have effects on individuals preferences on resources. In this, it is crucial that Daniels’ institution builders should be ignorant about their own age but not about what ageing is and how it affects individuals (the trade-offs it entails). To be able to perform justice, Daniels’ agents need the knowledge of how ageing unfolds temporally across stages. While I agree with Daniels that there is a close relationship between the performance of justice and the knowledge of ageing, my argument, drawing from the work of Boltanski and Thévenot, is that this relationship is enacted in a variety of different, practical ways (Boltanski and Thévenot 2006). My approach is empirical: I explore how particular forms of knowing the unfolding of ageing are linked to divergent regimes of ›just‹ allocation of resources. In this, I suggest that time, becomes both the topic of knowledge practices – in forms of temporality (Moreira 2007) – and the resource the different regimes attempt to distribute. In the main sections of the paper, I explore how the concept of MCI configures time as a discrete resource to be used by individuals, its economic, and label qualculations – a), b), and d) of the original model proposed in Moreira (2007) – articulate forms of temporality that differently configure the process of cognitive ageing and thus suggest divergent ideals of justice. I will dedicate particular attention to b) because of how it clearly articulates the issue. Similarly, in the paper, Alzheimer’s Disease and MCI is used not only as the vehicle through which these relationships can be studied but also, I further suggest in the final section of the paper, a key area to understand the relationship between health, ageing and justice in contemporary societies.

M i l d C o g n i t i ve I m p a i r m e n t a s › r i s k f a c t o r ‹ During the last years of the 1990s, a new diagnostic category stormed into the world of dementia research and practice: Mild Cognitive Impairment (MCI). A concept originally coined by

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the American neurologist Ronald Petersen to describe a transitional stage between normal cognitive aging and dementia (Petersen 2003), MCI was also explicitly devised as an attempt to bridge emerging biomolecular models of Alzheimer’s disease progression with secondary prevention therapies being devised in laboratories at the turn of the 21st century and the perceived increase in the presentation of ›mild memory problems‹ in the clinic around the same period (Petersen, Doody et al. 2001). This is well exemplified in the justification given for the concept of MCI in an important review of the concept »Basic research, such as the identification of secretase inhibitors and the development of an immunization model for the prevention of amyloid deposition, underscores the importance of developing techniques for early detection [of Alzheimer’s Disease]. Parallel with these endeavours, clinical research aimed at identifying the earliest signs of cognitive impairment has progressed. […] Mild cognitive impairment deserves recognition and further study because, as preventive treatments for AD become available, it will become incumbent on clinicians to identify persons at risk of AD and those with the earliest signs of clinical impairment.« (Petersen, Doody et al. 2001)

This quote identifies clearly the contexts in which MCI is embedded as a concept: pharmaceutical development and a close collaboration between clinicians and researchers to identify ›individuals at risk‹ in order to prevent the onset of Alzheimer’s Disease. From this perspective, MCI is a concept whose utility relies on its timely application: if individuals are identified late in their trajectory of progression, there will be no opportunity for biomolecular agents to perform their disease-modifying actions. The timeliness of its application relies, in turn, on identifying signs that predict whether the individual is going to develop such illness. To think about illness in such terms does not come as naturally as we might think. Indeed, we would have to wait until the second half of the 20th century to see how a conception of disease whose aetiology relies on an unfolding, long, continuous event to be established in the public arena. In what has been termed the return of public health, researchers, clinicians and policy makers identify the ›factors‹ associated with the on-

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Proportion Dementia Free

wit with the onset of illness over time (Rothstein 2003). It i 1 f no 0.95 0.9 0.85 0.8 0.75 0.7 0.65 0.6 0.55 0.5 0.45 0.4 0.35 0.3 0.25 0.2 0.15 0.1 0.05

Normal Controls

MCI Subjects

1

2 3 Years of Follow Up

4

5

Figure 1: Effect of MCI in dementia progression set of illness over time (Rothstein 2003). It is of no coincidence that the establishment of such policies of health, and of the research techniques that support them (such as longitudinal studies), came about at the same time as most countries of the developed world designed and implemented their ›Welfare State‹ with its concern about social justice. This coproductive link between knowledge and policy (Jasanoff 2004) becomes clear when we follow the socio-technical links that make the calculation of such factors possible. In the case of MCI, this unravelling can start by focusing on ›survival tables‹ used to demonstrate the effect particular signs have on the progression of dementia, as exemplified by Figure 1. A similar table as this reconstructed one was used by Michael Grundman, of the Alzheimer’s Disease Cooperative Study, in a presentation to the US Food and Drug Administration’s (FDA) meeting on MCI on the 13th of March 2001. In this meeting, as we argued in a previous paper (Moreira, May et al. in press), MCI was put to the test by the ›knowledge machinery‹ of the FDA to assess if it could extend beyond the realms of the ›specialised clinic‹ and be used in clinical practice. An important component of the arguments put forward by MCI proponents was that MCI diagnosis could predict future development

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of dementia, and thus could be used in secondary prevention trials and in clinical screening. As part of this argument, Grundman used the table showing the proportion of individuals that stay ›free of dementia‹ at 1-5 years of follow-up and comparing those with a MCI diagnosis and those considered normal. The conclusion of the two observed trends in the table – which was also stated in the title of the slide – was that ›individuals with MCI‹ develop dementia quicker than ›normal elderly‹. MCI represents thus a ›risk condition‹ for the development of dementia. There are two layers of enactment contained in such a statement. First, we need to attend to the making of the distinction between ›normal‹ and ›MCI‹ individuals. To be able to execute this distinction, studies of mild cognitive impairment repeat a standardised assessment of cognitive function at one year distance from each other. These normally entail a clinical interview, cognitive tests, and some tests relating to function and activities of daily living. Such repeated standardised assessments pick up differences across time. By plotting those into a table, we are provided with two ›neat‹ trajectories of cognitive decline. The impact of the table relies, in fact, on the divergence of trajectories from one common point in which they can be said to be the same (i.e. non-demented) except for the signs that MCI proponents suggest are worth of attention in screening assessments. The MCI category enables such distinction: it aims to equip clinicians with the ability to predict the likely future of an individual and to help that individual manage such a future. What the MCI proponents seem to be saying is that MCI is part of a programme of action that aims to maintain ›normal ageing‹ and prevent forms of ›abnormal ageing‹ such as dementia. The link with the notion of ›normal ageing‹ is both there in the table and in the manner MCI has been presented in the public sphere (Petersen 2003). The entanglement with such a programme is understandable. The emergence of Alzheimer’s disease in the 1970s–80s was framed and shaped by the efforts of the National Institute of Aging (NIA) in its efforts to crystallize a new political understanding of old age that distinguished ›normal‹ and ›abnormal‹ ageing (Holstein 2000). Such a vision of ›normal ageing‹ had been articulated successfully in the post war years by Nathan Shock, the American gerontologist who

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was also responsible for much of the political work around creating a national research programme on ageing from the 1950 onwards (Achenbaum 1995). Shock’s vision was one in which research, particularly longitudinal studies as the Baltimore Study on Ageing which he had designed, would change the public view of old age. Shock hoped that these studies would provide a »demonstration that ageing [was] not necessarily associated with deterioration and disease« and aimed to replace a fatalistic with an optimistic approach of old age where ›health maintenance programmes can make a major contribution‹ (Shock 1961). Health maintenance would correspond to the medical, social and political practices that enable the ageing individual to stay close to the ›normal ageing‹ trajectory. Conversely, biological and social processes that divert the individual from this trajectory are viewed as ›pathological‹. From this perspective, it is of no surprise that the individual that was charged with implementing such programme in the NIA, Robert Butler, had worked in the first longitudinal study devoted to establishing ›normal ageing‹ at the National Institute of Mental Health (1955–1962) and was responsible for coining the term ›ageism‹ to refer to stereotyping and discrimination of older people (Brome 1982). In this way, in the institutional core of the NIA the link between the longitudinal study of ageing and a particular view of social justice for older people became stabilised. This referred not only to establishing and publicising the parameters of normal ageing, but, in what Butler himself called the ›new gerontology‹, to providing ways to prevent age related pathologies (Achenbaum 1995). A just society, he and other gerontologists appeared to be saying, would be one that provided every individual with the opportunity to enjoy ›normal ageing‹, a temporal trajectory made visible only in the longitudinal studies Shock, Butler and others had established a few years before.

M i l d C o g n i t i ve I m p a i r m e n t a s ›economic object‹ A key feature of MCI is the way it is defined in relation to the development of therapeutics. In this perspective, it is the devel-

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opment of new compounds »such as secretase inhibitors […] that underscores the importance of developing techniques for early detection of AD« (see quote in previous section). This explicit, circular relationship between the development of pharmaceuticals and the creation of diagnostic techniques, although recognised by innovation studies for a long time, has become the source of continuous troubles for the proponents of MCI. In these pronouncements, researchers point to the close dependence between a diagnostic category and a vision of therapeutic innovation that relies on the basic science created in biomedical laboratories owned by large, monopolizing pharmaceutical corporations. For example, in one interview conducted with a US psychiatrist, she argued: »I mean I you know I’m happy that somebody manufactures drugs because I need something to prescribe to my patients, I don’t think there’s anything wrong with research and I don’t think there’s anything wrong with drug development, but I think there’s something wrong with premature conclusions about what a condition is and what it leads to and even before we have real agreement on the condition if we’re going to do drug trials and I think it will be very difficult to close that stable door (laughs) after the horse has bolted.«1

The problem with the ›horse bolting‹ was, according to her, due to how the inherent uncertainty of a condition, upon which there is no ›real agreement‹, can be adapted and extended to cover a variety of clinical situations. This possibility of MCI being too ill defined and ambiguous to provide any firm epistemological grounding for clinical and therapeutic work has been the reason why the FDA has convened the meeting on MCI in 2001, mentioned in the last section. Confronted with arguments that MCI had been created to only identify those at risk of dementia in order to enrol them in trials of preventive therapies and to create a future market for those therapies once the trial results guarantee their approval and market release or as directly associated with the quest for alternative therapeutic uses for older dementia drugs such as Donepezil, the FDA at1

Interview conducted for the study »Boundary Work, Normal Ageing and Brain Pathology« (PI. John Bond, Grant number ESRC RES-151-25-0032): 19.11.2004

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tempted to reach collective agreement on the existence (or otherwise) of the condition. To our sociological eyes these denunciations of economic forces driving the delineation and implementation of medical categories that draw on normal behaviour appear unproblematic. However, like the emergence of risk categories, they are entangled with a variety of changes in the socio-technical and political organisation of health care, particularly with the framing of medical innovation and delivery of care in economic terms. These transformations are aligned with the establishment of a neo-liberal mode of governance in North America, Europe and Asia, that trusts the market mechanisms of competition to provide societies with the solutions they require for problems with the best use of limited resources (Harvey 2007). What is more interesting from the point of view of this paper is how actors have attempted to manage such economic forces with the tools of economics. Originally conceived as a branch of welfare economics, and thus centrally concerned with mechanism of allocation of resources, health economics became, in the 1980s, a policy oriented discipline. It is of no coincidence then that one of the most successful programmes at the intersection of economics and policy that gave origin to the Quality Adjusted Life Year (QALY) was linked to the social and political transformations in Britain in the 1980’s (Ashmore, Mulkay et al. 1989). Here again a process of co-production of knowledge and policy was at play: the QALY attempted to shift the politics of clinical expertise by providing a measure of the ›value‹ of health interventions that could supersede the knowledge uncertainty of medical care. Technically speaking, the QALY is a technique for measuring the benefit obtained from medical interventions by giving a different ›weight‹ on time in different health states. In this, a year of life expectancy in perfect health is worth 1, whereas a year of less than perfect health is worth less than 1. It is argued that QALYs provide a form of currency to assess the extent of the benefits gained from health care interventions, not only in terms of survival but more importantly in terms of the »quality« of the time survived. QALYs only fully become useful when combined with the costs of providing the interventions, from which cost–utility ratios result. To calculate such ratios, it

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is necessary to ›model‹ both the disease in question and the effects treatments might have on its progression. This in turn is done through a Markov model. In these models, the aim is to calculate the accumulated effects of transition probabilities between different health states. If the average costs of different types of interventions are known and transition probabilities between health states with or without these drugs are also available, then it is possible to calculate the respective ›gain‹ that will be achieved with varying use of resources over a period of time. In this, the QALY aims at standardising the utility – the gain – derived from a scenario of resource utilisation and to provide discrete values for health care buyers and decision makers. It is an essential tool in the just allocation of resources. Or is it? One of the main criticisms of the QALY since its inceptions has been that it is inherently ageist. Ethicists and clinicians (Harris 1987; Evans 1997) argue that, in a QALY comparison, younger people, who typically have a greater span of life ahead of them, would be shown to gain more from treatment on the basis of their predicted life expectancy than older people, who would have fewer years to benefit from a particular healthcare treatment. Others disagree, on the basis that QALY are blind, in a Rawls’ian sense, to the age of individuals. This argument came to be ›put to the test‹ in the controversy over access to dementia drugs in the English NHS. I summarise the process below. Having recommended in 2001 that dementia drugs should be available on the NHS, The National Institute of Health and Clinical Excellence (NICE), in its draft revision of the guidance in 2005, suggested, after new analysis of the evidence, that these drugs were not cost effective and should not be prescribed to new patients diagnosed with clinical dementia. This derived from an health economic model developed by the Southampton Health Technology Assessment Centre (SHTAC) where, while agreeing that quality of life instruments used in dementia were inadequate and problematic, they suggested, based on a crosssectional study conducted in Canada, that it was possible to draw equivalences between cognitive scores and other dimensions of quality of life to construct ›health utilities‹. This allowed the SHTAC team to construct an economic model

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through which they could calculate the preferred metric, the cost-per-QALY gained. The SHTAC’s model was underpinned by the question: can these treatments delay institutionalisation (Loveman, Green et al. 2006)? It thus measures the costs of maintaining individuals with dementia in the community with and without treatment (plus cost of care in this health state for State expenditure) against the cost of full time care. To be able to construct this model it was essential that the ›health states‹ before and after institutionalisation could be mapped onto data of clinical effectiveness of these drugs because in the absence of clinical trial data on cost-utility, it was essential to link the effects of drugs on cognition measures in trials with assumed changes in health utility scores. This led to setting the cost-per-QALY-gained for these treatments twice or more above the NICE’s recommended threshold of £35.000 (Rawlins and Culyer 2004). This draft guidance provoked a strong media and public reaction, and a campaign organised by professional and the main patient/carer organisation, leading 100 UK members of parliament to explicitly support the campaign, and to the Secretary of State for Health asking NICE to reassess its cost-effectiveness analysis. After consultation with ›stakeholders‹ and an appraisal of new evidence supplied by manufacturers, NICE’s Appraisal Committee, recommended, in January 2006, cholinesterase inhibitors »as options in the management of people with Alzheimer’s disease of moderate severity only« (NICE, 2006). This furthered the controversy, with media, lay and professional commentators either objecting to the scientific grounds of the decision or denouncing the political weakness that the process of appraisal denoted. In May 2006, NICE published the Final Appraisal Determination and did not change its decision of January 2006. All major stakeholders submitted appeals on this decision, which were heard by NICE’s Appeal Panel in July 2006. It was in the Appeal Hearing that stakeholders most successfully articulated two of the main objections to the appraisal: that it ignored evidence it was preferable to ›maintain‹ patient cognitive abilities at an early stage – such as Mild Cognitive Impairment – rather than improve them at later stages of the disease, and that, linked to this, by shifting the emphasis of the evaluation to the later stages of the disease, NICE had increa-

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sed the ageist bias of the QALY calculation. The link between the staging of the illness and the ageist criticism is well illustrated in this exchange from Appeal proceedings in 13 July 2006: »Chairwoman: ›[…] may I ask Professor Stevens [Chair of NICE Appraisals Committee] about this issue of the assertion that QALYs discriminate against older people. I know we touched on this earlier but I would like you to expand the committee's thinking on using QALYs, with particular respect to how they reflect the needs of older people.‹ Stevens: ›[…] QALYs are our universal metric, it is our way of being fair across all technologies and all groups. On the issue of discrimination, […] it is theoretically possible for technologies that have an impact on the length of life to discriminate against those with a lower expectation of natural length of life remaining than on those that do not. In all the technology appraisals that we have done, that has never arisen and in this case there is no suggestion that the drugs affect length of life. So even the theoretical possibility is not there.‹ Chairwoman: ›Perhaps you could expand on this issue that I say is raised around just using two health states [in the model], pre-full-time care and full-time care?‹ Stevens: ›Modelling is a difficult business. It is a way of drawing together all the information you need.‹« (79–80)

Professor Stevens’ statement that ›modelling is a difficult business‹ beautifully encapsulates the tensions of knowledge-justice making for which the committee was trying to account. By proposing a staging of the illness within the model that differentiates between two types of time – before and after full time care is required – the committee was admittedly and openly simplifying the issue. This was required because of the significantly different costs involved in each of the ›health states‹. This was in turn underpinned by a model of disease progression and of the way therapies affect patients at different states of the illness. From this perspective, it is not surprising that the modest, and temporality limited clinical effects of cholinesterase inhibitors – the drugs in question – would be more cost-effective in delaying entering in full-time care for patients who were just about to do so.

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However, by measuring the effect of the drugs in terms of the savings achieved in State expenditure by preventing people from needing full-time care, the committee is also delineating the practical standard of justice that it can implement. If, for the committee, the use of the QALY is their ›way of being fair across all technologies and all groups‹, the unfairness, from the point of view of patient groups such as the Alzheimer’s Society, was in setting, in the model, this standard against costs and savings that were considerably higher than in other age groups. Full time costs of dementia – a disease of old age – are recognisably higher than other forms of illness that are less associated with ageing. They argued that including in the economic model the time-savings incurred by informal carers due to the drugs before institutionalisation »would immediately have made the drugs cost-effective« (Ballard, 2006). The unfairness lay not on ›theoretical possibilities of age discrimination‹ but on how the model emphasised costs in the later stages of the disease and downplayed savings in the earlier stages of the disease. What this controversy usefully illustrates is how different qualculations of time are linked to different forms of just allocation of resources, including that of time spent on ›health states‹. One version of this is NICE’s: the QALY is cast as an age-neutral tool of distributive justice. This differs from and challenges the notion that achieving ›normal ageing‹ is an individual right. The social costs and gains of such a trajectory are considered central to the calculation of the extension of this access to time. It might be that achieving such effects is not a good – i.e. just – use of resources for society. The QALY responds thus to the uncertainties about what is ›good‹ that the interviewee expressed in the beginning of this section in relation to MCI. Another version of the ›just‹ unpicks the underlying uncertainties that construct the QALY and proposes that ageing changes the rules of the game. By being ›behind the veil of ignorance‹ in relation to age, decision makers ignore the ways in which ageing ›naturally‹ affects the volume and value of resources spent for living. The QALY becomes ageist not just because of how it is affected by life expectancy of different age groups, but also because of how it does not compensate for how old age has consequences on resource consumption. Time is not the same across the lifecourse and that is the basis of the injus-

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tice. There is no equivalence of time that permits such comparison and as such, the critics of the QALY seem to be arguing, the standard discriminates and excludes on arbitrary grounds because it compares what cannot be compared.

M i l d C o g n i t i ve I m p a i r m e n t a s a › l a b e l ‹ As we saw in the introduction, it is not only the QALY that is experiencing critiques on the basis of its arbitrariness. Indeed, the most commonly heard complaint of clinicians in relation to MCI is that it remains a category too heterogeneous and unstable to be used in clinical practice (Gauthier and Touchon 2005) and there has been a sustained controversy within the field of dementia clinical management about this topic. One of the main concerns expressed is that, with multiple uncertainties about the efficacy of current therapies in preventing the progression from MCI dementia, there would be little patients would benefit from a diagnosis of MCI apart from extra monitoring and follow-up. Hogan and McKeith summarised the contradiction of MCI as category as such: »In the absence of an intervention proven to improve cognition or arrest progression, how does a subject with MCI benefit? Being labelled as cognitively impaired could have serious consequences.« (Hogan and McKeith 2001: 1131-1132)

The main consequences of an MCI diagnosis are limited to the knowledge of a probable decay. In this challenge, Hogan and McKeith are also confronting two types of temporality or more specifically two types of future: on the one hand, MCI is proposed with the promise of being able, through experimentation on persons at risk of dementia, to develop drugs that might arrest progression, however, on the other, such promise of drug development can only be made by closing off the future of patients. The hopes of biomedicine come thus up against the hopes of clinical medicine and patient care. In this conflict, Hogan and McKeith clearly position themselves on the side of ›clinic‹ and thus see MCI as a labelling, a product of medicalisa-

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tion and the imposition of medical categories by the researchers and pharmaceutical companies. Of particular interest here is the use of a social scientific category within a medical controversy. Such appropriation of ›labelling‹ as a social phenomenon occurs at the intersections of two fields of research: the sociology of deviance and social psychology of risk. As above, it is important to fully contextualise such knowledge practices in their relations to particular political cultures and concerns in order to understand how they are related to ideals of the just society. On the one hand, there is the long sociological tradition of analysing social categories as ›labels‹, that is to say, of the application of rules and convention to individuals. In its classical formulation, labelling theory saw deviance, crime as other ›social problems‹ as a function of the normative situation individuals find themselves in rather than of individuals’ characteristics per se (Becker 1973). This questioning of deviant categories and behaviours was both an enterprise in knowledge making and political action and thus it is of no surprise that the classic labelling studies focused on social categories that remained outside the mainstream of American Society in the turn of the 1960. Labelling theory embodied a critique of American society and the way it worked to exclude individuals and groups form symbolic recognition and institutional involvement. During the 1960s, labelling theory progressively encroached into the domain of medicine and participated in the wider social critique against medicine and processes of medicalisation (Illich 1976a). One of its first targets was psychiatric diagnosis and knowledge (Scheff 1966). In this specialised version, labelling theory transported a critique of the way knowledge was constructed in medicine and how it was allied with mainstream in the implementation of social control. It argued, rather powerfully given the social and cultural context in which these critiques were articulated, that medical diagnosis was a form of institutionalising a societal reaction to perceived dangers (›mad‹, ›bad‹, etc). Through this alliance between science and the State, categories were able to be enforced and to generate a form of secondary deviation in which the individual accepted and internalised the category, experiencing exclusion from primary

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groups of affiliation and identification with the new label. Labels would have thus deleterious effects by promoting exclusion and fostering dependency (Gerhardt 1989). While powerful in wider social arenas, the medicalisation critique found its own way to medicine through a differentiation of the types of diagnosis at a time when the risk conditions and disease markers were becoming a more central part of medical care. In this process, while clinical diagnosis of illnesses were left, for the most part, unquestioned (pace homosexuality and childbirth), the uncertainty surrounding risk conditions was articulated in terms of the possible adverse psychological consequences of ›risk notification‹. The landmark study in this research field is usually considered to be that conducted by Haynes, Sackett and colleagues (1978), later to become the main instigators of the Evidence-Based Medicine movement (Sackett, Straus et al. 2000). In this study of Canadian steelworkers, individuals who were identified as hypertensives showed significantly higher levels of absenteeism. Although criticised within psychological circles for its emphasis on objective, possible economic consequences of screening, the study articulates the tension between the growth in screening and health promotion and a lack of understanding of health behaviours by policy makers. If risk notification was supposed to help individuals modify behaviours, it was failing in that it promoted illness identification and self-excluding practices. The concept of label encapsulated the dangers of the diagnosis process when not linked with a proper understanding of the normative and psychosocial processes that mediate individual lives. The significance of the alliance between the social sciences and disease prevention policies was first identified by Phil Strong (1979). His argument that the medicalisation of the social was paradoxically not being achieved by medicine but mainly through the identification of ›risky behaviours‹ in socio-epidemiological studies and their targeting in State-funded screening programmes is crucial to understand how the medicalisation critique became attached to risk conditions. As such it represents a eulogy to the clinic and its moral order against the opening of a temporal order that is beyond the limits if human interaction. This is an issue of scale that has both epistemic and political consequences. The order of the clinic performs a form

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of knowledge that politically enacts treatment and diagnosis as temporally unfolding in a complex process. This is perhaps the reason why MCI does not fully fit within this logic. MCI’s main labelling effect is the anxiety created by a horizon of further cognitive decline that may be large and impairing (Corner and Bond 2006). It depends, as we saw in the first section, on the establishment of temporal trajectories of cognitive decline and articulating ›just treatment‹ expectation from them. It is also linked, as we saw in the second section, to differentiating the quality of time experienced along this trajectory, and to blocking the equivalences of claims to resources that different groups can make. In this, it enacts the clinic as the space of formulation and differentiation of these trajectories. The clinic however has its own version of what is fair and just: caring (Mol 2007). Care is a matter of tinkering, here and now. It focuses on the specific situation in which people find themselves, and trusts that small re-arrangements will produce a new and workable way of doing things. It brackets off the horizon of cognitive decline as something that simply does not belong to any specific situation. It is not part of the actual (or, for that matter, any future actual) ›here and now‹. The just appears as a matter of ›just this now‹, a form of mundane specificity; the unjust as a matter of the undue result of linking individuals to ideals and standards, as the spoilt time that comparisons carry. This is avoiding standards – such as that of ›normal ageing‹ – by avoiding comparison and the construction of equivalences.

Health, ageing and justice In the prologue to this book, I have explored how ideals of justice are entangled with forms of knowing and enacting ageing as a temporal process. My point of departure was the societal debate around justice and ageing between ›fair innings‹ arguments that would intensify opportunities in early stages of life and ›healthy ageing‹ proposals that emphasise the continuing participation of older people in all arenas of life supported by health. I have argued that a Rawls’ian solution to the problem of ageing and justice is predicated upon a knowledge of ageing

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that black-boxes the normative and political processes that are embedded in standards and an ideal of ageing. I was particularly concerned by how the idea that trade-offs existed in the ageing process was advanced by philosophers without reference to the politico-epistemic context in which this emerged. For this reason, I have described how particularly forms of knowing the unfolding of ageing are linked to divergent regimes of ›just‹ allocation of resources. In this I hope to have shown that, in practice, challenges to forms of just allocation of resources are most often linked to critiques of ways and dispositifs of knowing ageing (the longitudinal study, the economic model, etc). MCI was the ideal vehicle to understand these processes because of how it sparked a variety of controversies and problems within the field of dementia research, management and policy. But where others might have preferred to explore the ›risk categories‹ as closely aligned with neo-liberal forms of governmentality, I have focused on the uncertainties that it revealed about the ideal of normal ageing, the attribution of value to life, and the shaping of experience. Prevention programmes and health maintenance policies are complex socio-technical objects where these uncertainties are enacted through extended discussion and experimentation. Through them it is possible to observe the permanent re-constitution of identities and forms of knowledge. These revolve, as I have shown, around particular enactments of temporality. In this, they make visible how our ageing identities are underpinned by co-productive relations between science and society and that rather than aiming for a return to ›old ways‹ of making ageing identities, it is perhaps more important to attempt to invent or describe new procedures and devices that will help us to do so. So let me give you an example: Time Slips project (www. timeslips.org/). Time slips project is a story telling method that celebrates the creativity of people with dementia. It started out a theatre project designed by Anne Basting, in which she used interviews she had done with persons with dementia as both material and structural resource for the construction of the play. What this means is that she used the erratic, repetitive, warping forms of story telling used by people with dementia not only as the material of the play but also as a method to construct the

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structure of her own play. So instead of a usual beginning, middle, and end structure of plays and stories, there are jumps, cuts and folds in the narratives of the play. Those are the time slips. As a knowledge device, the project, while building upon the deconstruction of authorship and genre conventions that are common in post-modern criticism, and that influenced Anne Bastings conception of the original play, is able to challenge our expectations about ageing. This is because its evocation of ageing and dementia at once familiar and more alien. This feeling is shared by actors who perform the play: in one post play session – inserted in a conference about MCI – with Basting herself and one of the actors, the actor told that this had been the most difficult play he ever performed mostly because all the conventions of theatre and human interaction were constantly breached. There were not any cues to hang on, no time structures to follow, no rhythm, no progression: just randomness, but a ›randomness that was somehow not just you coming up with words‹. It was that structure within that made it alien, or to put it in his own words ›dementing‹. The actors thought that after a few hours practicing the play, they were feeling confused themselves. While feeling anxious about this in the beginning, the actors said they gained an enormous amount in their knowledge of acting by slowly stepping in the structure of Time Slips. They learned to see other stories and plays as nonlinear, and began playing time-linear plays as time-slip stories. The project now continues as a packaged activity that can be practiced by trained persons in association with person with dementia. This performative power of storytelling (Law 2004) is particularly important because it is associated in this instance with the time-slip structure of the play: the temporal order of common discourse – that goes this happened and then that happened – is replaced by another form of ordering that goes rather like »this happened, what happened?« It is by relying on this other temporal ordering – another, alternative temporal qualculation – that Basting was able to bring to life in her play the assumptions about the demented self that are embedded in our fear of it. By bringing to the fore another time, the time slips projects brings to us a form of insight. By bringing this uncertainty to the fore, Time Slips provides an insight into the slips,

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inversions, mistakes and misunderstanding that come with our understanding of ageing and how to ›prevent‹ it.

References Achenbaum, Andrew W. (1995). Crossing frontiers: gerontology emerges as a science. Cambridge, Cambridge University Press. Armstrong, David (1995). »The rise of surveillance medicine« Sociology of Health & Illness 17: 393-404. Ashmore, Malcolm, Michael J. Mulkay and Trevor J. Pinch (1989). Health and efficiency: a sociology of health economics. Milton Keynes, Philadelphia, Open University Press. Austin, CD (1991). »Aging well: What are the odds« Generations 15(1): 73-5. Becker, Howard Saul (1973). Outsiders: studies in the sociology of deviance. New York, Free Press. Boltanski, Luc and Laurent Thévenot (2006). On Justification: Economies of Worth. Princeton, Princeton University Press. Brayne, Carol , Lu Gao, Michael Dewey, Fiona E. Matthews and Medical Research Council Cognitive Function and Ageing Study Investigators (2006). »Dementia before Death in Ageing Societies — The Promise of Prevention and the Reality« PLoS Medicine 3(10): e397. Brome, Vincent (1982). Ernest Jones: Freud's alter ego. London, Caliban Books. Cochoy, Franck (2002). Une sociologie du packaging ou L'âne de Buridan face au marché. Sciences sociales et sociétés. Paris, PUF. Corner, L and J. Bond (2006). »The Impact of the Label of Mild Cognitive Impairment on the Individual's Sense of Self« Philosophy, Psychiatry, & Psychology 13(1): 3-12 Daniels, Norman (2008). Just Health: Meeting Health Needs Fairly. Cambridge, Cambridge University Press. Daniels, Norman (2009). »Just health: replies and further thoughts« Journal of Medical Ethics 35(1): 36-41. Evans, Grimley J (1997). »The rationing debate: Rationing health care by age: The case against« BMJ 314: 822. Gauthier, Serge and Jacques Touchon (2005). »Mild cognitive impairment is not a clinical entity and should not be treated« Archives of Neurology 62(7): 1164-6; discussion 1167.

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Gerhardt, Uta (1989). Ideas About Illness: An Intellectual and Political History of Medical Sociology. New York, New York University Press. Harris, John (1987). »QALYfying the value of life« Journal of Medical Ethics 13(3): 117-123. Harvey, David (2007). A Brief History of Neoliberalism. New York, Oxford University Press. Haynes, Brian R., David L. Sackett, D. W. Taylor, E. S. Gibson and A. L. Johnson (1978). »Increased absenteeism from work after detection and labeling of hypertensive patients« New England Journal of Medicine 299(14): 741-744. Hogan, David B. and Ian G. McKeith (2001). »Of MCI and dementia: improving diagnosis and treatment« Neurology 56(9): 1131-2. Holstein, Martha (2000). Aging, Culture and the Framing of Alzheimer's Disease. Concepts of Alzheimer Disease: Biological, Clinical, and Cultural Perspectives. Peter J. Whitehouse, Konrad Maurer and Jesse F. Ballenger. Baltimore, Johns Hopkins University Press. Illich, Ivan (1976). Limits to Medicine. Medical Nemesis. New York, Pantheon. Jasanoff, Sheila, Ed. (2004). States of Knowledge; The CoProduction of Science and the Social Order. New York, Routledge. Law, J. (2004). After Method: mess in social science research. Oxon, Routledge. Loveman, Emma, Colin Green, et al. and Andrew J. Clegg (2006). The Clinical and Cost-Effectiveness of Donepezil, Rivastigmine, Galantamine and Memantine for Alzheimer's Disease (Health Technology Assessment). Tunbridge Wells, Gray Publishing on behalf of NCCHTA. Marmot, Michael G. (2003). »Understanding social inequalities in health« Perspectives in Biology and Medicine 46(3): S9-S23. Mol, A (2007). The Logic of Care: Active patients and the logic of choice. Twente, University of Twente. Moreira, Tiago (2007) »How to Investigate the Temporalities of Health« Forum: Qualitative Sozialforschung / Forum: Qualitative Social Research 8, 13 Moreira, Tiago, Carl R. May and John Bond (in press). »Regulatory Objectivity in Action: Mild Cognitive Impair-

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ment and the collective production of uncertainty« Social Studies of Science. Petersen, Roland C., Rachelle Doody, et al. (2001). »Current concepts in mild cognitive impairment« Archives of Neurology 58(12): 1985-92. Petersen, Ronald C. (2003). Mild Cognitive Impairment: Aging to Alzheimer's Disease. Oxford, Oxford University Press. Rawlins, Michael D. and Anthony J. Culyer (2004). »National Institute for Clinical Excellence and its value judgments« BMJ 329(7459): 224-7. Rothstein, W. G. (2003). Public Health and the Risk Factor: a history of an uneven medical revolution. Rochester, MI, University of Rochester Press. Sackett, David L., Sharon E. Straus, Scott W. Richardson, William Rosenberg and Brian R. Haynes (2000). EvidenceBased Medicine: How to Practice and Teach EBM. Edinburgh, Churchill Livingstone. Scheff, Thomas J. (1966). Being Mentally Ill: a Sociological Theory. Chicago, Aldine Pub. Co. Shock, Nathan W. (1961). »Public Health and the Aging Population« Public Health Reports (1896-1970) 76(11): 10231027. Strong, Philip M. (1979). »Sociological imperialism and the profession of medicine. A critical examination of the thesis of medical imperialism« Social Science & Medicine 13A(2): 199-215. Wilkinson, Richard G. (2005). The Impact of Inequality: How to Make Sick Societies Healthier. London, Routledge.

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Will the Entire Population be O ve rw eight b y 2 230 ? Common Se nse, Sc ie ntific Consensus and the ›Obesit y Epidemic‹ ISABEL FLETCHER

Large body size has historically been interpreted in many ways – as evidence of the sin of gluttony, as a sign of prosperity and, in places where tuberculosis or HIV/AIDS are common, as a sign of health. However, in Western Europe and the United States, large body size is currently defined as ›overweight‹ or ›obesity‹. Obesity (and to a lesser extent overweight), takes large body size out of the category of an individual attribute or a moral failing and defines it as a medical problem. In this chapter I will argue that, in the last ten to fifteen years, obesity has been redefined as a global public health problem. As obesity is, by definition a medical problem (Sobal 1995: 70-71), this redefinition is not an example of medicalisation, rather what I describe here is a shift in medical understandings of obesity. »Obesity is a chronic disease, prevalent in both developed and developing countries, and affecting children as well as adults. Indeed it is now so common that it is replacing the more traditional public health concerns, including under-nutrition and infectious disease, as one of the most significant contributors to ill health.« (WHO 2000: 1)

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This quote, from a widely publicised World Health Organisation (WHO) technical report on obesity, illustrates a major change in understanding of obesity. Obesity is now considered as a major public health problem that affects populations in both rich and poor countries worldwide. In this chapter I aim to analyse when and how this change in understanding took place. This framing of obesity as a major public health problem sees prevalences of overweight and obesity as continuing to increase, and leading to significant increases in population illhealth that cannot be afforded by under resourced health care systems. The following quote, from a letter to The Lancet (one of the most prestigious medical journals in the UK) written by two American obesity researchers and published in July 1995, demonstrates the ways in which such ideas were being regularly discussed in the medical press: »Obesity continues to rise in industrialised nations, an apparent unstoppable side-effect of modernisation. The American public spends $33 billion per year in weight-control efforts, without any apparent success at population level. Based on prevalence studies from 1960 to 1991, we calculate that by the year 2230, 100% of adults in the USA will be overweight, as defined by a body mass index of more than 27.8 for men and 27.3 for women […] The immense research effort into obesity has not yet culminated in effective help for the overweight. 34 894 publications related to obesity have accumulated since 1966, with 4785 related to treatment. Even so, there is still no non-surgical treatment that reliably produces lasting weight loss.« (Foreyt and Goodrick 1995: 134)

The image of the entire American population as overweight is striking, but seems fundamentally unlikely since even in populations with very high levels of obesity, such as the Samoans, some individuals remain slender. Such inflated and hysterical imagery is very typical of the rhetoric that surrounds the ›obesity epidemic‹; and for those reasons makes a good title for this chapter. At this early stage of my research, I cannot explain why this shift in understanding of obesity occurred or analyse the entire ›obesity epidemic‹ phenomenon, but in this chapter I hope to outline one of its important elements, namely changes in scientific and policy understandings of obesity. These

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changes are, of course, intertwined with other factors that include the increasing costs of healthcare in affluent countries and the economic interests of both pharmaceutical companies and the food industry. Other important factors more internal to obesity science are changes in research funding and individual career paths. This chapter will start with a brief description of my research methods, and discuss the resources from Science and Technology Studies and the history of medicine I use in analysing this empirical material. Once I have given a brief outline of the immediate context of the period of my research, I will then provide a brief overview of the history of obesity science, highlighting the changing understanding of obesity found in my material. I will go on to argue that this changing understanding can be best described as the development of a new paradigm of obesity which I will summarise. In particular I will use the work of Thomas Kuhn and Sheila Jasanoff to argue that this involves the development of a new regulatory science or advisory science paradigm. Finally, I shall conclude by examining some of the broader implications of these findings: how these changes relate to larger scale developments within biomedicine.

Outline of research approach and methods Until very recently my research has been largely document based. Because of my interest in the term ›obesity epidemic‹ I began to research the history of its use in the popular and scientific press. I rapidly tracked it back to the WHO technical report 894, referred to above, titled Obesity: Preventing and Managing the Global Epidemic which was published in 2000. This was an important focus of my early research. Section 3 of this chapter, addressing the history of obesity science, is based on the background reading that I also undertook at this period in my research. I then analysed a series of British reports on the topic of obesity beginning with a 1969 report by the Office of Health Economics (Office of Health Economics 1969), a pharmaceutical industry funded think-tank. This was my starting point because, as far as I am aware, it was the first modern report on the topic.

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The series finishes in 2000 with the WHO technical report and includes six other documents: in total two of the eight reports were produced by the Office of Health Economics, three by UK government departments or ad-hoc committees, two by professional organisations and one by the World Health Organisation1, 2. The material for section 4 of this chapter on obesity paradigms is based on these documents. My analysis does not extend beyond the WHO technical report of 2000 because the main elements of what I have labelled as the ›environmental‹ or ›population‹ paradigm of obesity are all present in this report. These eight documents were selected for two reasons. The first was availability; these are most of the reports that were produced on the topic during this period3. The second reason was the involvement of Professor Philip James who was part of the group producing five of these eight reports. Philip James, currently head of the International Obesity Taskforce, has been involved in the production of government reports on the problem of obesity since the 1970s, and was a key figure in the production of the WHO technical report on the subject. He has adopted an almost campaigning role to successfully argue that obesity should be understood as a major public health problem, and so it seemed important to analyse the reports with which he was involved. Finally, I am aware that this is a restrictive sample, which limits the claims that I can make about my findings. However, given that my study involves the development of a new shared understanding of obesity, and alternative constructions of the relationship between bodyweight and health do not form part of these discourses, this small sample is sufficient to illustrate the changes I will discuss.

1

2 3

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I anticipate that this list will eventually end with the UK government Foresight report Obesities: Future Choices published in 2007. The organisations are the Royal College of Physicians and the Scottish Intercollegiate Guidelines Network. Obviously I have restricted my sample to those published in English, but I have also chosen to focus on the British and European political contexts. I have not yet been able to get access to one report by the British Nutrition Foundation, published in 1999.

WILL THE ENTIRE POPULATION BE OVERWEIGHT BY 2230?

In order to provide a context for my understanding of these changes, I also tracked the coverage of obesity, the WHO technical report, and the WHO itself in the UK medical press (The Lancet and the British Medical Journal) between 1993 and 2002. In the last six months, I have also begun to interview a variety of practitioners and academics who write about obesity. Interviewing is supplementing my documentary research in interesting ways, and allowing me to discuss some preliminary understanding of my topic with public health practitioners and other researchers.

T h e o r e t i c a l f r a m ew o r k My research aims to apply the conceptual tools of Science and Technology Studies (STS) to public health, nutritional science, and specifically ideas about the relationship between body weight and health. These are areas that have not been well covered by STS scholars, who, when analysing the biological sciences, have concentrated on recent developments in the life sciences e.g. genomics, reproductive technologies, stem cell research and synthetic biology. One major exception is Garrety who writes about the development of a consensus around the relationship between cholesterol and heart disease (Garrety 1997). It seems obvious to apply STS to nutritional science as it is a very significant example of the role(s) that science plays in everyday lives. Writers, such as Gard and Wright (2005), whom I discuss below, have also taken an implicitly STS approach to the obesity epidemic, without labelling themselves as working in this field. This is also a study of the formation of consensus. One of the things that surprised me when I started this research was how little controversy the idea of an ›obesity epidemic‹ attracted. There are people and groups who dispute both the link between obesity and ill-health, the existence of increases in average body weight and the fact that this constitutes a global public health problem (Campos 2005; Oliver 2006) but these accounts have remained marginal throughout the period of this study. Therefore, my research is mostly studying the formation of a consensus or common sense, which is an approach that can

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be traced back to Thomas Kuhn (Kuhn 1970) and his ideas of the role of paradigms in normal science. Kuhn’s concept of paradigm provides a way of understanding science in terms of constellations of concepts, theories and practices; large elements of which are taken for granted and unchallenged. This captures the way in which obesity has been discussed since the 1960s, and allows me to analyse sets of understandings and practices that are shared amongst relatively large and diverse groups of research scientists, clinical practitioners and policymakers. Kuhn’s ideas and the relevance of his approach remain contested within contemporary STS. However, the scale and complexity inherent in the concept of paradigms is particularly useful in the context of my research, unlike more localised concepts such as »epistemic communities« (Knorr-Cetina 1999). What is being analysed in this chapter is not just the science of obesity, rather it is a hybrid science-policy paradigm in which obesity as a public health problem and its possible solutions are being co-produced (Jasanoff 2005). This is because scientific knowledge about obesity is a form of biomedical knowledge that has also developed in areas other than the laboratory or the clinic. Apart from epidemiological studies – which I will discuss later – much of this knowledge is assembled in official reports and other policy documents. It is an example of the kind of advisory science about which Sheila Jasanoff has written extensively (Jasanoff 1990; Jasanoff 2005). Steven Hilgartner (2000) has also written about this kind of science in his study of controversies about three National Academy of Science reports on the links between diet and health, but as far as I am aware nobody has written about the science of diet and health in the context of the UK4. Technologies of quantification and enumeration are an essential element of this advisory science. Within STS there is also a body of writing that addresses the growth of these practices. Deriving from the work of Michel Foucault, Nikolas Rose dis4

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Another approach would be to examine this as a case of the relationship between field science (epidemiological studies) and laboratory science (biochemical and physiological research on animals and humans) in a similar manner to Robert Kohler’s analysis of the modern history of biology (Kohler 2005).

WILL THE ENTIRE POPULATION BE OVERWEIGHT BY 2230?

cusses the increasing use of measurement of individuals and populations by governments (Rose 2007). Porter also provides a series of case studies demonstrating the growth of quantification as a social technology (Porter 1995); Yvonne Jansen discusses this point in more detail in this book. These studies overlap with the work of Rothstein that I discuss below. Of particular relevance to the study of obesity is work on the development of new standards and forms of classification of human bodies (Bowker and Star 1999; Hacking 1999). Hacking is the only one of these writers to explicitly discuss obesity, when he uses it as an example of a »kind of people« (Hacking 2006), but obesity is not the central focus of his research. Methodologically, I have also adopted Elizabeth Fee and Daniel Fox’s approach of contemporary history, developed in their writing about AIDS as a chronic disease (1992). Fox and Fee argue that such an approach allows for an emphasis on the social construction of diseases, scepticism about ideas of progress, and an avoidance of presentism which they define as using analogies from the present to interpret earlier and still not well understood events (see Fee and Fox 1992: 9). This theoretical approach fits very well with the basic approach of social constructivist STS. Because there are strong historical elements to this approach I am also able to use material from the history of medicine to supplement these theoretical resources. Within the history of medicine, several authors have written on changing ideas about body size and fat (Schwartz 1986; Stearns 1997; Sobal and Maurer 1999). These authors provide useful historical context for my research since they illustrate changing ideas about the relationship between excess weight and ill-health, and the development of research into the underlying physiological processes involved in nutrition and weight control. Jeffery Sobal (1995) also argues that from the late nineteenth century until the 1970s obesity was increasingly medicalised and in the last twenty to thirty years a process of de-medicalisation has occurred as political demands for the acceptance or rights of fat people have become more accepted.5 In contrast, other authors conclude that 5

I see no evidence of similar successful campaigning in the UK, but would also question his assumption that obesity can be de-

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despite the existence of alternatives to the medical framing of obesity – for example social justice and market choice framings (Kwan 2009) – the medical framing remains dominant (see also Saguy and Almeling 2008). The history of public health research in the early 20th century is also starting to be written (Mendelsohn 1998; Amsterdamska 2001; Amsterdamska 2005). William Rothstein (2003) has also written on this period in the history of public health, focusing part of his discussion on cardiovascular disease and describing the development of the concept of risk factors. His account is another important part of the historical context to my research because much of the science I am studying comes out of the post second world war anxiety about rates of cardiovascular disease (Rothstein 2003: 192 - 209). However, his broader analysis of the development of statistical analysis in modern medicine, which he describes as an »incomplete revolution« is also very important for understanding the use of risk factors in classifying populations and explaining clinical and individual experiences of disease. This analysis is complemented by the work of Robert Aronowitz (1988) who outlines the history of the ›risk factor approach‹ to cardiovascular heart disease (CHD) and the central role that the Framingham Heart Study played in the development of this new way of understanding heart disease. He links this change to changes in economic circumstances, research practices, professional organisation and disease classification that took place in the US in the 1950s and 1960s (Aronowitz 1988: 113). In a similar fashion to heart disease in the early part of the twentieth century, obesity has also been labelled as an epidemic. It is important to investigate the consequences that flow from labelling such chronic non-infectious conditions as ›epidemics‹. Rosenberg discusses the socially contingent nature of defining a disease as an epidemic, as opposed to endemic. His argument is that this process ultimately depends on the level of disease expected to exist within a particular population; therefore plague was epidemic among the white colonising population of India in the nineteenth century, but endemic amongst medicalised, given the history of the term as a medical synonym for ›fat‹.

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the indigenous Indian population (Rosenberg 1992; Rosenberg 1998). The »expected« level of disease in a population is obviously an important topic for sociological analysis, and assessments of increasing levels of overweight and obesity are a crucial element of my research material.6

A History of Obesity Science Historical overview of biomedical research into cardiovascular disease Before outlining my empirical findings, I am going to give a brief overview of modern biomedical research into cardiovascular disease (CVD), since this is the context from which research into obesity largely developed. Diseases such as heart disease, stroke, diabetes and cancer have often been known as non-communicable diseases (NCDs) to differentiate them from infectious diseases such as cholera, typhoid and tuberculosis. Infectious diseases were the major cause of mortality and morbidity in the UK, Europe and the USA in the 19th and early 20th centuries. Some authors argue that a combination of public health measures, such as improved sanitation, and new drugs, including sulphanilamide and penicillin, led to declining mortality from infectious diseases and increasing rates of non-communicable or ›degenerative‹ diseases. This process has been labelled the ›epidemiological transition‹ and some authors argue that it resulted in dramatic increases in life expectancy in industrialised countries (McMurray and Smith 2001: 9).7 The phenomenon

6

7

In the context of stem cell research, Nik Brown and Mike Michael (Brown and Michael 2003) have written about the role of expectations and hype in the development of medical technologies, however, imagined profits from novel applications of biomedical technologies are different from projected levels of morbidity and mortality in a population The framing of changing patterns of health and illness as an ›epidemiological transition‹ and the role of medicine in these changes is hugely contested. Critics such as McKeown (1979) argue that improved sanitation and nutrition (from increased standards of

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of increasing prosperity has been seen to lead to higher rates of NCDs and links debates around obesity to an ancient strand of thought about ›diseases of civilisation‹ where the unhealthiness of modern lifestyles are compared to the superior lifestyles of earlier generations (Rosenberg 1998). In the early twentieth century, the development of mortality statistics by American insurance companies showed a statistical link between body weight and mortality, particular from heart disease. As rates of infectious disease fell, there was widespread medical concern about high rates of heart disease amongst certain populations (Rothstein 2003). In the 1950s this situation was described as an ›epidemic‹ of heart disease, that particularly affected middle aged men. Because the precise causes of this epidemic were unknown a major research effort was seen as necessary, particularly in America, but also in Europe. Coronary heart disease is a multi-factorial condition that develops over several decades, and researchers could not identify specific aetiological factors, as for infectious diseases (Rothstein 2003: 5). Such a research programme was extensive, and therefore expensive. Clinical research was undertaken in order to understand the physiological mechanisms underlying heart disease and other non-communicable diseases. At the same time, large scale studies such as the Framingham Heart Study were also set up in order to determine accurate prevalences of CHD and identify factors that would predict it (Aronowitz 1998). As it continued Framingham became a study of the development of cardiovascular disease in a previously healthy population, and an attempt to understand its relationship to specific physiological and behavioural factors such as age, gender, smoking, diet and physical activity (Rothstein 2003: 279-285).8 Although deaths from heart disease have begun to decline in rich countries (see Rothstein 2003: 343) there is still a profound concern about the impact of these ›epidemics‹ upon the

8

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living are responsible, rather than new drug treatments or preventive practices such as inoculation. Although not mentioned in these reports, another important line of research developed into the personality traits and behaviours that were seen to result in increased vulnerability to CHD, the stereotypically competitive and deadline orientated individual labelled ›Type A man‹. (Aronowitz 1988; Riska 2000)

WILL THE ENTIRE POPULATION BE OVERWEIGHT BY 2230?

life expectancy of individuals and populations. In the period of my research a discourse of the »double burden of disease« has also developed (WHO 2000). This describes how poor countries face the combined problem of high rates of infectious disease with increasing rates of non-communicable diseases due to increasing industrialisation and urbanisation. A concern for obesity derives very readily from biomedical research into CVD. It is initially understood as an important risk factor for chronic diseases such as heart disease, stroke and diabetes. However, as the focus on obesity increases, it becomes treated more often as if it were a disease in its own right (Aronowitz 1988: 116).9 I have developed a timeline of the important events relevant to my research. As part of this process I have also tried to divide this period into different phases (or maybe strata) in order to understand the changes that have been taking place. An edited version of this timeline is presented below. It is divided into four phases as an ad-hoc way of making sense of a large body of empirical material – the changes that make up the shift to a new paradigm of obesity occur throughout the entire timeline, at different points for different aspects of that paradigm (as discussed in section 4).

First phase late 1940s to 1969: obesity as a risk factor for coronary heart disease In this period the first big epidemiological studies like the Framingham Heart Study and the Seven Countries Study begin (1948 and 1958) and the results of the Build and Blood Pressure Study (1959) are published. These studies are often jointly funded by US university public health departments and international organisations such as the WHO. The actuarial tables of the Metropolitan Life Company are the standard reference for adult weights. In the statistical data quoted from these tables, body sizes are classified on the basis of percentage of average weights - >110% of average weight considered overweight and

9

These same processes can be seen to have occurred, to a lesser extent, with high blood pressure and high blood cholesterol levels

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> 120% obese: frame sizes are included in height and weight tables. There is a geographical movement of information from US to the UK and this American data is absorbed into existing British research activities. Using the framework developed by the Framingham researchers (Aronowitz 1998), obesity is usually described as a risk factor for other conditions, notably heart disease, and individual solutions of appropriate diet are recommended, (there is a worry that exercise is counterproductive since it increases appetite). The research summarised in the reports of the period is asking whether all obesity is the same, and whether it is an inevitable part of aging. It is also investigating whether the obese are different from the non-obese in significant ways (other than weight), such as metabolism.

Second phase 1970s to mid 1990s: the growth of obesity science The WHO MONICA (Multinational MONItoring of trends and determinants in CArdiovascular disease) project starts in 1979. This becomes an important source of data about increasing rates of obesity in European populations. Occasional reports are produced exclusively on obesity in the UK (Department of Health and Social Security and the Medical Research Council 1976; The Royal College of Physicians 1983); this increasing focus shows how obesity is making the transition from being understood as a risk factor to being treated as a disease in its own right. BMI (body mass index)10 is starting to be used to classify body sizes, the standard definition (BMI > 25 is overweight, and > 30 is obese) is proposed in 1973 by George Bray, at an international obesity conference, and gradually becomes widely adopted: frame sizes become less important and, by the end of this period, obsolete. As part of these processes the list of the health consequences of obesity is becoming standardised, (i.e. developing a 10 The formula for body mass index is W/H². It was developed by the French statistician Adolphe Quetelet in the early 19th century and initially known as the Quetelet Index. In the reports I discuss, it is first known as W/H² and then BMI. I have kept to the name used by each report’s authors.

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routine form that was repeatedly cited) in part due to the results coming out of the Framingham Heart Study and the second American Cancer Society study. The focus in the reports during this period is still on individual solutions such as appropriate diet, but there is more stress on ideas of healthy eating, and discussions of the limited role of exercise in weight loss are starting to be included. Research cited is still questioning whether the obese are different from the non-obese in significant ways (other than weight).

Third phase 1995 to 2002: obesity becomes a global public health problem During this period there is an increase in activity around the topic of obesity – the Scottish Intercollegiate Guidelines Network (SIGN) report is published in 1995, the International Obesity Taskforce (IOTF) is founded in 1996, the National Obesity Foundation (NOF) is founded in 2000. A major series of papers containing results from the WHO MONICA study are published in 2000. The WHO consultation takes place in 1997, and Technical Report 894 is published in 2000; subsequently the phrase ›obesity epidemic‹ is frequently used in the popular and scientific press.11 In this report, and other WHO publications, the increasing prevalences of obesity become seen as a global problem, supported by ideas of the ›double burden of disease‹ affecting poor countries (Murray and Lopez 1996: 9). Towards the end of this period the focus of concern shifts increasingly onto the problem of increasing rates of childhood obesity. Obesity becomes described as a major public health problem that will reduce life expectancy and increase healthcare costs significantly (figures are often given to support these arguments). Solutions discussed in these reports, and in both the scientific and popular press, include individual ones of better diet and increased activity levels but also broader based ones of restricting advertising and sales of certain kinds of foods. Research continues into the physiology of appetite and maintain-

11 Once this usages is established obesity then becomes regularly described as »pandemic« (Manson, Skerrett et al. 2004) or using a new term »globesity«.

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ing body weight, but it is now generally accepted that the majority of the overweight are the same as the rest of the population, except that at, some point, they have over-consumed. However, at the same time there is a developing understanding that some populations seem more vulnerable to obesity and the accompanying health problems than others. The standardised BMI classification has been widely accepted and is used by the WHO, but there is also the beginning of discussions about whether they should be different for some groups e.g. S.E. Asians. This shows the movement between a global classification system and the development of specific classifications for different population groups that incorporate the metabolic differences resulting from varying levels of maternal nutrition and neonatal development.

Fourth phase 2003 – present: policy responses to the problem of obesity The number of official reports about the public health problem of obesity increases again, including the report of the UK government Foresight scoping project Tackling Obesities: Future Choices which is published in 2007. European initiatives including the Platform on Diet Health and Activity DIoGENES (Diet, Obesity and genetics, which is a multi-centre research project) and the PORGROW project, which investigates potential policy responses to the public health problem of obesity, are launched. The important role of sedentary lifestyles in leading to weight gain is stressed – for children blame is put on too much time spent watching TV or playing computer games. Obesity starts to be widely and routinely described as an environmental, rather than solely an individual, problem – the phrase »obesogenic environment« (Egger and Swinburn 1997) becomes widely used and accepted (parallels start to be drawn with global warming). Environmental solutions such as redesigning urban space in order to promote physical activity begin to be discussed alongside traditional individual solutions. Increased policy discussion is not reflected in concrete responses – perhaps because the problem is widely acknowledged to be complex and multi-faceted. The secondary literature analysing this new understanding of obesity also begins to grow.

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Interestingly, despite the recent spread of genetic explanations for disease, they have not become common in this area of biomedicine. Although there are a few specific genetic conditions that give rise to obesity in a minority of individuals, the search for a genetic cause for obesity in the majority of the population has been unsuccessful. In fact, supporters of the idea of an obesogenic environment argue that the fact that dramatic changes in the prevalence of obesity have taken place in the last 20 years shows that the causes cannot be genetic (WHO 2000: 101). Surgical treatments have developed enormously in this period, but have not led to significant changes in understandings of obesity, or potential treatments for the majority of patients. Throughout this period research into the basic physiological processes involved in appetite, digestion and regulation of body weight, as well as more focused research looking for potential therapies has continued. There have been periods of excitement, most notably after the discovery of leptin in the mid 1990s (Shell 2003) and a growing list of drugs that have been prescribed for weight loss and then been withdrawn due to adverse health effects. However, these developments also do not seem to have profoundly changed the ways that obesity is currently understood.

The two paradigms of obesity These phases cover changes in the measurement of obesity and the subsequent classification of bodies; in understandings of the causes and health consequences of obesity; in research undertaken about obesity and related chronic diseases; and in the potential policy responses to it. As I have accumulated this material I have become increasingly aware of the links between these developments, and argue that they are best thought of in terms of the development of a new paradigm of obesity. The older individual understanding of obesity still retains some explanatory power in particular situations, but it has been supplemented and, in some cases largely eclipsed, by a broader environmental and population based understanding of obesity. Because they operate at different levels of explanation (i.e. the individual and the population) these two different understand-

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ings of obesity are not mutually incompatible; mostly they coexist with limited areas of overlap. They aren’t exemplary achievements (Kuhn 1970), but they do contain different conceptions of the problem of obesity, different sources of information about it and lead to different sets of practices around it, so I think the concept of paradigm is an appropriate one to use in this context.

The individual and the population/environmental paradigms of obesity In the older documents I have analysed, obesity is understood as an individual health problem, but from the 1980s onwards a different understanding of obesity develops in which it has become a population issue, and a major public health problem: »weight gain and obesity are posing a growing threat to health in counties all over the world.« (WHO 2000: 1). In the rest of this section I shall describe six areas of significant difference between these two advisory science paradigms of obesity. Table 1 (below) summarises this discussion by comparing the older (pre-1990s) individual paradigm of obesity, and the new population/environmental (post-1990s) paradigm.

1. Incidence/prevalence data The individual paradigm of obesity was developed in a context where the prevalence of obesity was usually understood to be relatively low and, thus, it could be seen as an entirely individual problem. In the earlier reports, small scale studies from the UK are usually cited and prevalence of ›clinical Obesity‹ is estimated at 20% in one study (Office of Health Economics 1969: 5). After information had started to be collected in the UK, one report gives prevalences that use BMI to define 6% of men and 8% of women as obese and 34% of men and 24% of women as overweight (The Royal College of Physicians 1983: 21). However, rising incidences of obesity were one of the major reasons for the change in understandings of obesity: if the majority of a population are (or will become) overweight or

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obese, it makes no sense to understand it as an entirely individual condition. In 1994 the second Office of Health Economics report argues that in the UK, »over half the male population and just under half the female population are overweight to a clinically undesirable degree« (West 1994: 5). The 1995 Department of Health report gives figures of 13% of men and 16% of women as obese, and a total of half the adult population as overweight or obese (Department of Health 1995:2). In the WHO technical report the figures for prevalence come from the WHO MONICA project and European national surveys and NHANES (for the US). Information for other parts of the world is repeatedly described as inadequate. However, the available information was described as showing high or increa sing rates of obesity for all areas of the world. In particular, to

Individual Paradigm

Environmental/ Population Paradigm

Incidence/

Low and stable

High and increasing

prevalence of

prevalence so an

incidence so a

obesity

individual health

population/public health

problem

problem

Measurement

Measurement by weight and

Measured by BMI

and

frame size

classification of bodies Accepted

Knowledge of health risks

Knowledge of health risks

consequences

derived from case histories

comes from large scale

of obesity to

and insurance company

epidemiological studies

health

tables

Assumed

Due to overeating and lack

Due to living in an

causes of

of exercise

obesogenic environment

Treatment/

Corrected by dietary

Solutions involve changing

prevention

restrictions

supply and restructuring

cost of

Cost of obesity limited and

Cost of obesity becomes

obesity

mostly born by individuals

significant problem for

obesity

urban environments

national healthcare systems

Figure 1: The two paradigms of obesity

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compare with the figures above, the prevalence of obesity for England is given as 15% for men and 16.5% for women; for China it is given as 2% for men and 1% for women; for the US it is 20% for men and 25% for women, and for urban Western Samoa it is given as 58% for women and 77% for men (WHO 2000: 22). Rates of overweight are no longer discussed.

2. Definitions of obesity and classifications of bodies The individual paradigm of obesity uses height and weight table with ranges of ideal weight to define individuals: »The commonest method is to weigh an individual and check the weight against average weight tables. Almost all such tables are based on US data collected by 26 large life insurance companies over a period of twenty years, and involving the observation of nearly five million insured people« (Office of Health Economics 1969: 4).

Relative weight is used as a way of classifying the overweight and obese. The standard used is the Metropolitan Life Insurance Company reference tables: »A cut-off point often used for separating obese from non-obese is a relative weight 120 per cent of the ›desirable‹« (Department of Health and Social Security and the Medical Research Council 1976: 4). A later report introduces the classification of 110 – 119% of ideal weight as overweight, and greater than 120% as obese (The Royal College of Physicians 1983: 4). The Metropolitan Life Insurance Company tables also use frame sizes to give a range of ideal weights12. This is a measure of obesity that is relative to the average weight in a given population. The environmental paradigm of obesity uses BMI13 to classify individuals and populations. This is a measure that does not depend on average weights; it is in some sense an absolute standard. The weight/height² calculation is first mentioned in the Department of Health and Social Security (DHSS)/ Medical 12 For a 5ft 9in man these range from 136–145 lbs for a small framed individual to 151-170 lbs for a large framed individual; for a 5ft 5in woman the comparable ranges are 111-19lbs and 125-142lbs (OHE, 1969: 5). 13 BMI is defined as W/H² i.e. weight divided by height squared

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Research Council (MRC) 1976 report as an alternative to relative weight, but not actually used throughout that report, although Bray’s classification of desirable weight, overweight and obese14 is also mentioned. In the Office of Health Economics report of 1994 and the 1996 Scottish Intercollegiate Guidelines Network (SIGN 1996), Bray’s classification is presented as standard, and by the time of the WHO technical report these processes of standardisation are complete, since it has become the global standard; although the authors also acknowledge that the cut-off points may need to vary between populations, due to different susceptibilities to the metabolic consequences of obesity (WHO 2000: 8).

3. The assumed causes of obesity On an individual level, the causes of obesity have been understood, since Hippocrates and Galen, to be overeating and a sedentary lifestyle (Gard and Wright 2005: 70 - 71). In the earlier reports it is seen to be caused by consuming too many calories – too much food – but also too much of the wrong type of food i.e. a diet high in fat and sugar (Office of Health Economics 1969: 11). It is also seen to be caused by too little exercise. However, studying the association between low levels of physical activity and obesity is complicated by the problem of »whether this is a primary condition which induces obesity or a secondary response to the high energy cost of moving« (Department of Health and Social Security and the Medical Research Council 1976: 30). A key element of the environmental paradigm of obesity is that the causes of obesity are environmental or structural rather than solely individual.15 The first mention of environmental

14 A BMI of 20-24.9 is considered a desirable weight; a of BMI 2529.9 as overweight: a BMI of 30-40 as obese and a BMI >40 as severely or morbidly obese (WHO 2000: 9) 15 These authors acknowledge that the incidence of obesity is inversely related to socio-economic class, however, the link between environmental stresses and the development of insulin resistance that would allow a connection to be made with work

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causes of obesity comes in the Royal College of Physicians’ report: »British and American epidemiological studies are consistent with environmental factors being important in determining the body weight of both children and adults« (Royal College of Physicians 1989: 24). However, the argument is not further developed in this report. The WHO technical report argues that the rising proportion of fat and increasing energy density of diets combined with reduced levels of physical activity are contributing to rises in average body weights of populations. The authors extend this argument to state that »The global obesity problem can be viewed as a consequence of the massive social, economic and cultural problems now facing developing and newly industrialised countries, as well as ethnic minorities and the disadvantaged in developed countries.« (WHO, 2000: 102).

4. Describing the health effects of obesity For individuals some of the health effects of obesity have been part of medical knowledge since antiquity, but statistical knowledge of relative risk is incorporated into the Metropolitan Life Insurance Company tables so that they listed »desirable« weights for men and women of different heights based on »weights associated with lowest mortality« (Office of Health Economics 1969: 4). The Build and Blood Pressure Study (Society of Actuaries 1959) was also cited to show that amongst men more than 10% overweight excess mortality was found to be approximately 20% and amongst men more than 20% overweight it was almost one third (Office of Health Economics 1969; Department of Health and Social Security and the Medical Research Council 1976). Health consequences listed included mechanical i.e. effects on joints, obstruction of breathing and varicose veins, and metabolic i.e. diabetes and raised cholesterol leading to heart disease. Beginning with the Royal College of Physicians Report in 1983, the list of health consequences of obesity starts to becomes

on the social determinants of health (Marmot and Wilkinson 1999) is not made in these documents.

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standardised, using the data from Framingham and the American Cancer Society studies. The list includes coronary heart disease, hypertension, diabetes, gall bladder disease, arthritis, certain kinds of cancers and psychological problems (The Royal College of Physicians 1983: 9). By the time of the WHO technical report, the authors can argue that most of these consequences are »well documented«, supported by a number of studies or the association between obesity and the risk of developing a condition has been »repeatedly observed« (WHO 2000: 47). Thus a consensus has been created about the wide ranging and negative effects of obesity on mortality and morbidity.

5. Treatment and prevention The individual to the environmental paradigm contain different ideas about the appropriate treatment of obesity. In the new paradigm, there is a partial acceptance of the ineffectiveness of dieting; the subject of physical activity is also regularly discussed, as its role in the prevention of weight gain became seen as important. Initially the treatments discussed are calorie restricted diets of various kinds, sometimes combined with medication such as amphetamines, »to help the patient adhere to a particular diet« (Office of Health Economics 1969: 24)16. In these earlier reports, there was also a worry that exercise would increase appetite: »whilst both activity and resultant heat loss owing to muscular inefficiency dissipate body energy, they also lead to an increase in both caloric requirements and appetite« (Office of Health Economics 1969: 22) The beginnings of a shift to broader environmental causes of obesity is shown in the conclusion of one early report which discusses measures that the government and food manufacturers could take »to promote change in the national diet« (Royal College of Physicians 1989: 50) such as breeding animals with lower body fat, promoting the use of low fat spreads and developing low fat, low sugar processed foods. The 1995 De16 The most widely prescribed drugs in the 1960s were amphetamines; in the 1980s fenfluramine and phentermine were often used (The Royal College of Physicians 1983: 79).

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partment of Health report is the first to argue for a population approach to the problem of obesity (Department of Health 1995). It discusses trends in food consumption, physical activity and environmental temperature as factors that might explain increases in average BMI, and also lists steps to be taken by the NHS, local authorities, schools, workplaces and industry in order to increase activity levels (Department of Health 1995: 10). The WHO technical report discusses prevention and management strategies that focus on »elements of the social, cultural, political, physical and structural environment that affect the weight status of the community or population at large« (WHO 2000: 154).

6. Costs to healthcare services Initially, obesity is described as making up a small proportion of GPs consultations and not ordinarily being the sole cause of a patients visit. The cost of obesity is estimated at £3.5 million, made up of £3 million on prescribed drugs and the rest on hospital-bed days (Office of Health Economics 1969: 25).17 The second Office of Health Economics report gives the direct costs of obesity to the NHS as £29.35 million, made up of costs from general practice (the largest element), inpatient treatment, outpatient treatment pharmaceutical service and treatment by dieticians (West 1994: 39). By contrast, the WHO technical report quotes a range of international studies of both the direct and indirect costs of obesity estimating that they amount to 2 to 7% of total health care costs or 12 000 million francs in France for 1992 and $56 300 million in the US for 1986. The report authors’ argue that these figures »clearly indicate that obesity represents one of the largest items of expenditure in national health care budgets« (WHO 2000: 79).

17 This figure is also described as small compared to the much larger sums spent by individuals on diet foods and slimming products.

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Discussion In the sections above, I have outlined six changes that have occurred in scientific understandings of obesity – in its prevalence and incidence, its measurement, its causes, its health effects, its treatment and its cost to healthcare systems. I have argued that these changes when combined amount to a new understanding of obesity which I have labelled an advisory science paradigm shift. I am not arguing that they amount to a scientific revolution, as Kuhn (1970) would understand it, since the two paradigms of obesity continue to co-exist, and the changes I describe are incremental ones that have occurred with each new report or other enactment of the paradigm. However, other writers have accepted that this is one way in which paradigm shifts can occur (Barnes 1982: 86-7). The science of obesity contained within these reports is based on physiological and epidemiological research, but goes beyond it by constructing an argument for obesity as a national, and then a global, health problem. The conclusions of these reports are a synthesis of many different research studies, created by the work of ad hoc committees, government departments and international organisations such as the WHO. Hence, these processes create a new entity of advisory science or »policyrelevant science« (Jasanoff 1990). Using such a perspective to discuss the new science contained in these reports brings together the work of Thomas Kuhn with that of Sheila Jasanoff (ibid and see also Jasanoff 2005) to understand the processes involved in the creation and dissemination of advisory or policy science paradigms. It involves considering particular reports as enactments of such paradigms and understanding the development of such hybrid knowledge/policy practices. Tentative explanations for such changes include the growth in obesity science (deriving from the overall growth in biomedical research in this period) and the increasing amount of health statistics collected about individuals and about health care services. Another important element is the role played by particular entrepreneurial scientists, such as Professor Philip James, who adopt a dual role as research scientists who also serve on governments committees and compile the reports I

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have analysed. But these factors do not explain the impressive success of such initiatives. Recent social science writing about health and illness argues that in the last twenty or thirty years population-level knowledge about health risks has been used to identify and target ›at-risk‹ individuals as part of wider attempts to convince them of their personal responsibility for their future health (Rose 2007). In other words, this body of literature depicts a focus on the health of populations as another means of individualising responsibility for health. However, my research raises questions about this line of argument. This is because the environmental paradigm of obesity, which constructs obesity as a population-level health issue, does not target individual health behaviour, but rather emphasises interventions that are aimed at populations e.g. structural factors such as changes in food production and manufacturing and changes in the built environment and transportation systems. This suggests that biomedical understandings of the relationship between individual and population health are more complex than our current social science theories allows.

Conclusion In this chapter, I have summarised important developments in recent obesity science. I have outlined how it developed out of a more generalised concern with rising rates of NCDs amongst populations of industrialised countries experiencing increased prosperity after World War 2. This concern led to a major research effort that attempted to understand the causes, and prevention, of conditions such as heart disease, diabetes, cancer and stroke. Clinical and laboratory research into NCDs was supplemented by large scale epidemiological studies, such as the Framingham Heart Study, in order to identify the most significant risk factors for such diseases. One of the effects of such research was to identify obesity as one important risk factor, and intensify a process of medicalisation that had begun with the publication of the Metropolitan Life height and weight tables in the earlier part of the century. Obesity made the transi-

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tion from a personal characteristic to an important risk factor for several important chronic medical conditions. In the second part of this chapter I argued that in the last twenty years there has been an important change in the way that obesity is understood, both medically and as a public health problem requiring the development of new policy solutions. As I have outlined above this new understanding, which I have labelled the environmental/ population paradigm, encompasses new information about the prevalence of obesity, about its causes, its health effects, its treatment and its costs to healthcare systems and society at large. It seems obvious that obesity is now understood as a global epidemic because of the rising prevalences that have been documented in communities in Europe and North America. However, I would argue that although average body weights may be increasing in certain populations, this bald fact is insufficient to explain the development of a consensus around the idea that rapidly increasing rates of obesity have to be tackled as a matter of urgency before they decrease average life expectancies and bankrupt healthcare systems. This understanding has become commonsense, partly due to decades of research and lobbying of governments, and international organisations such the WHO, by a group of committed obesity scientists who saw it as a major public health problem decades before the current high levels of concern. In making this argument I am not trying to put forward a conspiratorial understanding of such developments. All branches of biomedical research have to lobby for funding and attention from policymakers. Nor am I trying to impugn the motives of the individuals who have adopted this campaigning approach to the problem of obesity. Public health research and policymaking is usually undertaken by people who see themselves as tackling important public health problems. 18

18 This sense of purpose exists despite knowledge of the harmful side effects of certain treatments for overweight and obesity (pharmaceutical, surgical and dietary) and is seen by activists and other critics of the obesity epidemic to promote discrimination against individuals of larger body size.

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My research is different from many of those who have already written on obesity, not only because it uses the theoretical tools of STS to analyse the science behind ideas of the epidemic, but also because it does this in a systematic and symmetrical (Bloor 1976a) fashion that is not part of a critique of the construction of obesity as a public health problem. Such approaches (Fee and Fox 1992) are important because they can unpick the development of common sense ideas about what issues should be the focus of public health and preventive medicine. They, therefore, have value as a way of analysing claims made by different individuals, and groups, about the urgent nature of particular health problems, including the ones with which I began this chapter.

References Amsterdamska, Olga (2001). Standardizing Epidemics: Infection, Inheritance and Environment in Prewar Experimental Epidemiology. Heredity and Infection: The History of Disease Transmission. Jean-Paul Gaudilliere and Ilana Lowy. London, New York, Routledge: 135-180. Amsterdamska, Olga (2005). »Demarcating Epidemiology« Science, Technology & Human Values 30(1): 17-51. Aronowitz, Robert (1988). Making Sense of Illness. Science, Society and Disease. Cambridge, Cambridge University Press. Barnes, Barry (1982). T. S. Kuhn and Social Science. London and Basingstoke, The Macmillan Press. Bloor, David (1976). Knowledge and Social Imagery. London, Henley and Boston, Routledge and Kegan Paul. Bowker, Geoffrey C. and Susan Leigh Star (1999). Sorting things out. Classification and its Consequences. Cambridge, Massachusetts, The MIT Press. Brown, Nik and Mike Michael (2003). »A Sociology of Expectations: Retrospecting prospects and prospecting retrospects« Technology Analysis & Strategic Management 15(1): 318. Campos, Paul (2005). The Diet Myth: Why America’s Obsession with Weight is Hazardous to Your Health. New York, Gotham Books

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Department of Health (1995). »Reversing the increasing problem of obesity in England: A Report from the Nutrition and Physical Activity Task Forces«. Department of Health and Social Security and the Medical Research Council (1976). Research on Obesity: A Report of the DHSS/MRC Group. Egger, Gary and Boyd Swinburn (1997). »An ›ecological‹ approach to the obesity pandemic« British Medical Journal 315: 477-480. Fee, Elizabeth and Daniel Fox (1992). AIDS: the making of a chronic disease. Berkeley, University of California Press. Foreyt, John and Ken Goodrick (1995). »The ultimate triumph of obesity (letter)« The Lancet 346: 134-135. Gard, Michael and Jan Wright (2005). The Obesity Epidemic: Science, Morality and Ideology. London and New York, Routledge. Garrety, Karin (1997). »Social Worlds, Actor-Networks and Controversy: The Case of Cholesterol, Dietary Fat and Heart Disease« Social Studies of Science 27(5): 727-773. Hacking, Ian (1999). Making Up People. The Science Studies Reader. Mario Biagioli. London, New York, Routledge. Hacking, Ian (2006). Kinds of People: Moving Targets. British Academy Lecture. London: 18. Hilgartner, Stephen (2000). Science on Stage: Expert Advice as Public Drama. Stanford, CA, Stanford University Press. Jasanoff, Sheila (1990). The Fifth Branch: Science Advisors as Policymakers. Cambridge, MA, Harvard University Press. Jasanoff, Sheila (2005). Designs on Nature: Science and Democracy in Europe and the United States. Princeton and Oxford, Princeton University Press. Knorr-Cetina, Karin (1999). Epistemic cultures: how the sciences make knowledge. Cambridge, MA and London, Harvard University Press. Kohler, Robert: (2005). Landscapes & labscapes: exploring the labfield border in biology. Chicago, London, University of Chicago Press. Kuhn, Thomas Samuel (1970). The structure of scientific revolutions. Chicago and London, University of Chicago Press.

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Kwan, Samantha (2009). »Framing the Fat Body: Contested Meanings between Government, Activists, and Industry« Sociological Inquiry 79: 25 - 50. Manson, JoAnn E., Patrick J. Skerrett, Philip Greenland and Theodore B. VanItallie (2004). »The Escalating Pandemics of Obesity and Sedentary Lifestyle: A Call to Action for Clinicians« Archives of Internal Medicine. Marmot, Michael and Richard Wilkinson, Eds. (1999). Social determinants of health. Oxford and New York, Oxford University Press. McKeown, Thomas (1979). The Role of Medicine. Oxford Basil Blackwell. McMurray, Christine and Roy Smith (2001). Diseases of Globalization: Socioeconomic Transitions and Health. London and Sterling VA, Earthscan. Mendelsohn, J. Andrew (1998). From Eradication to Equilibrium: How Epidemics Became Complex After World War 1. Greater Than The Parts: Holism in Biomedicine Christopher Lawrence and George Weisz. Oxford, New York, Oxford University Press. Murray, Christopher J and Alan D Lopez (1996). The Global Burden of Disease. Cambridge, MA, Harvard University Press. Office of Health Economics (1969). »Obesity and Disease«. Oliver, Eric J. (2006). Fat Politics: The Real Story Behind America's Obesity Epidemic. Oxford, New York, Oxford University Press. Porter, Theodore M. (1995). Trust in Numbers; The Pursuit of Objectivity in Science and Public Life. Princeton, New Jersey, Princeton University Press. Riska, Elianne (2000). »The rise and fall of Type A man « Social Science and Medicine 51: 1665 -1674. Rose, Nikolas (2007). The Politics of Life Itself: Biomedicine, Power and Subjectivity in the Twenty-First Century. Princeton and Oxford, Princeton University Press. Rosenberg, Charles (1992). Explaining Epidemics. Cambridge, Cambridge University Press. Rosenberg, Charles (1998). »Pathologies of Progress: The Idea of Civilisation as Risk« Bulletin of the History of Medicine 72(4): 714-730.

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Rothstein, William G (2003). Public Health and the Risk Factor: A History of an Uneven Medical Revolution. Rochester NY, University of Rochester Press. Royal College of Physicians (1989). Prenatal Diagnosis and Genetic Screening: Community and Service Implications. London, The Royal College of Physicians. Saguy, Abigail C and Rene Almeling (2008). »Fat in the Fire? Science the News Media, and the ›Obesity Epidemic‹« Sociological Forum 23 (1): 53 – 83. Schwartz, Hillel (1986). Never Satisfied: A Cultural History of Diets, Fantasies and Fat. New York, London, Toronto, Sydney and Auckland, Anchor Books Shell, Ellen Ruppel (2003). Fat Wars: The Inside Story of the Obesity Industry. London, Atlantic Books. SIGN (1996). Obesity in Scotland: Integrating Prevention with Weight Management. Edinburgh, Scottish Intercollegiate Guidelines Network. Sobal, Jeffery (1995). The Medicalization and Demedicalization of Obesity. Eating Agendas: Food and Nutrion as Social Problems. Donna Maurer and Jeffery Sobal. New York, Aldine de Gruyter. Sobal, Jeffery and Donna Maurer (1999). Weighty Issues: Fatness and Thinness as Social Problems. New York, Aldine de Gruyter. Society of Actuaries (1959). Build and blood pressure study. Chicago, Society of Actuaries. Stearns, Peter N (1997). Fat History: Bodies and Beauty in the Modern West. New York, London, New York University Press. The Royal College of Physicians (1983). »Obesity: A report of the Royal College of Physicians« The Journal of The Royal College of Physicians 76(6): 5-65. West, Richard (1994). Obesity. London, Office of Health Economics. WHO (2000). Obesity: Preventing and Managing the Global Epidemic Geneva, WHO.

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Prevention as a Side Effe ct? Distributing Trial Partic ipa nts in a Pharmaceutical Drug Trial PETRA JONVALLEN

Accessing and recruiting healthy, sick or ›at risk‹ populations willing to participate in clinical trials, and then managing the data that is collected are some of the central tasks that contract research organisations (CROs) perform today on behalf of the pharmaceutical industry. In the last ten years, these companies have taken over up to ninety percent of the recruitment of participants and the management of clinical trials; a job previously performed by academic health centres or communal clinics (Mirowski and Van Horn 2005: 506). These developments are a result of the pharmaceutical industry’s need to increase the speed at which trial participants are enrolled in order to get drugs to the market faster (Rainville 2002). This large scale privatisation of part of the work performed in clinical trials has created new sites and practices which, drawing on the work of Annemarie Mol (2002b), I suggest provide a number of new enactments of the seemingly coherent term ›trial participants‹. To analyse how trial participants are enacted in clinical trials within this broader frame of organisational change, the paper departs from Mol’s notion of multiplicity (2002b). In her book The Body Multiple, she demonstrates that (and how) the disease arteriosclerosis is enacted differently at different sites of a hos-

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pital. For example, under the pathologist’s microscope, arteriosclerosis is a blocked blood vessel. For the patient going to the clinic, it is the pain she has in her leg preventing her from taking the walks she is used to. Mol describes how arteriosclerosis is able to coexist with little friction in the hospital in which she did her study and shows that ›good care‹ is delivered in spite of such ontological differences. The present chapter is an attempt to apply the notion of multiplicity, not to obesity and diabetes that the drugs on trial portray to alleviate, but to the seemingly coherent category trial participants itself. More precisely, it is asking how a trial participant is being enacted by looking at three different stages of the clinical trial process: from the work performed to recruit participants, via screening those recruited to find a suitable group on which to test the drug, to the actual performing of the clinical trial where the scientific data is collected. During my ethnographic research I was often confronted with the varied uses of the terms participant, patient and research subject, which occurred to an extent and in a manner that seemed at times arbitrary. This use of the terms led me to wonder about the relationship between the terms and what kind of participant they imply. The argument Mol makes that a disease is multiple and made to coexist in practice is thus extended to apply to trial participants. There are two important differences between Mol’s analysis and the present one, however. First, the terms patient, participant and research subject already signal that there are different ontologies present in clinical trials. The category, at a closer look, does not seem coherent after all. What I will show is that there are more enactments of trial participants than these three terms convey. The second difference in relation to Mol’s book is that multiplicity is studied in relation to two ›macro-level‹ phenomena that serve as a backdrop for clinical trials on obesity and diabetes drugs. One is the overall changes in the organisation of pharmaceutical production, namely the privatisation of trial participant recruitment and management through the establishment of CROs. Another is the efforts made in making populations healthier, where health promotion and educational prgrammes exist side by side with the development of obesity and diabetes drugs. I will argue that these two phenomena are related to a

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shift in the meaning of clinical trials. In 1996, Steven Epstein, who has done research on clinical trials on AIDS medications, asserted that the social meaning has shifted from being framed as research to being framed as care (Epstein 1996). I will here suggest, through the example of obesity and diabetes drugs, whilst bearing in mind the specificities of the AIDS and obesity/diabetes fields respectively, that clinical trials on the latter are shifting yet further, if indirectly, to being part of large-scale prevention programmes. I will end by discussing the implications of such a shift, and what it may imply for what can be seen as ›good care‹.

M u l t i p l i c i t y, d i s t r i b u t i o n a n d c o o r d i n a t i o n Mol’s example of arteriosclerosis is a good one to illustrate the point of coexisting multiplicities, and the reader is left struck at how treatment options are decided on relatively smoothly despite the different enactments made of the disease in different parts of the hospital. Multiplicity, according to Mol, coexists in different ways: through distribution, coordination and inclusion: »Work may go on so long as the different parties do not seek to occupy the same spot. So long as they are separated between sites in some sort of distribution.« (Mol 2002b: 88). Distributions keep the different enactments of a single object apart. The object (in this chapter that which is represented by the term participants) bridges the boundaries between the different sites and helps to prevent distribution from becoming the pluralising of the object into separate and unrelated objects (see Mol 2002: 117). The object seems coherent, when the different practices enacting it are bracketed. When these practices are taken into account however, it becomes less coherent. This does not necessarily imply fragmentation. Mol explains the relationship between the object and the practices enacting it in terms of fluidity: »The object enacted does not cohere, but there is an itinerary (held together with forms, appointments, conversations) along which a patient may move from one site and situation to another« (ibid. 115-116). It is by studying the variety of enactments that it is possible to see how objects are made to cohere.

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A problem with this argument, however, is that the hospital organisation as such, is overlooked. To this end, Rabeharisoa has formulated a critique in relation to what Mol refers to as the fluidity of spaces, saying that »[…] if spaces are fluid, it’s because there is an organisation, that we see little of in the book, that allows this fluidity« (Rabeharisoa 2004: 6). And, I would add, the itinerary along which the patient moves is held together by organisational devices such as software programmes, forms filled out by doctors and nurses and by conversation. The clinical trial organisation does not only consist of such ›micro‹-level phenomena, however. I argue that changes in the organisation at large need also be included in the analysis. The lack of organisational descriptions in Mol’s book mirrors the more general tendency that science and technology studies (STS), of which Mol’s book is a part, deny there being structural differences over time in how science has been paid for and organised (Mirowski and Sent 2007). The large-scale privatisation of clinical trial management is one such structural change that needs to be accounted for in analyses of the pharmaceutical production practices so intertwined with contemporary health care. To alleviate this risk of bracketing differences over time (and being daunted by multiplicity) they suggest using an approach that stresses the »essential historical instability of the commercial/communal binary as instantiated in actual concrete practice« (Mirowski and Sent 2007: 639) and recognizes that there are »certain identifiable institutional structures involved in organising scientific inquiry in the modern period« (ibid: 640). Such reasoning is in line with the critique of other actor-network theory studies that claim actor network theory to be too focused on local contingencies at the expense of broader social and cultural processes (Layne 1998; Parayil 1999). Drawing on these critiques, I will focus on how those that conduct the practices of clinical trials – academic researchers, care workers, contract research organisation employees – organise the multiple ontologies of trial participants. Clinical trials, undergoing fundamental organisational changes, are therefore a useful example. The enterprise of clinical trials involves a number of actors (care personnel, pharmaceutical companies, governmental or communal organisations, etc.) and practices

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(recruitment, blood testing, scheduling, etc.). Hence, clinical trials are interesting to study because they serve as a meeting point for many and sometimes conflicting interests (Oudshoorn 1994), or as nodes in a network of such different actors. Like other practices in clinical settings, trials also involve a number of non-human actors (Law 1991; Latour 1993). In one of the CROs I studied, two non-human actors were a database where volunteering trial participants are registered, and a computer software that helps to manage and monitor the trial as it proceeds. It is the collaboration of these elements taken together that is central to how the trial participants are enacted at the sites of local practice, taken together with an analysis of organisational change. In so doing, this chapter is an attempt at analysing the broader organisation of clinical trials in trying to tease out how multiplicities do coexist.

Methods Before I go on to describe the different enactments of the trial participants in clinical trial practice I will mention something about the empirical data underlying the analysis and how it was collected. The chapter draws on ethnographic fieldwork, semi-structured interviews as well as website and documentary data from two different CROs. The drug on trial in the ethnographic study was on a substance registered for another disease than obesity or diabetes, and a known side effect was loss of appetite and weight loss. The trial was designed to study if this side effect could be turned into a main effect through comparing one group of participants receiving dietary advice and the drug, with a group receiving dietary advice and placebo. I did ethnographic fieldwork during a six month period in 2002 in the university hospital where the trial was performed and interviews were conducted between 2002 and 2004 with four dieticians, seven nurses, one computer scientist and six medical doctors associated with that drug trial, as well as with two representatives of a patient organisation. In addition to this, I have had informal discussions with employees at two different CROs in Sweden and studied their websites, both of which have been involved in performing drug trials on obesity and

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diabetes drugs. In addition to this I have gone through the websites of ten other CROs in order to identify similarities and differences between them. In order to understand the many work tasks involved in conducting clinical trials I have also studied the two clinical trial protocols that were used in the clinical trial on obesity and diabetes that were part of my ethnographic fieldwork.

Three types of distributions I have identified trial participants as situated in at least three different sites, each with its own sets of practices. Firstly, I analyse how trial participants are enacted as employees at a university campus student event. The second site is the office of the CRO that provides software to schedule recruited participants, and where participants are enacted as raw material in a production process. Finally, I analyse how trial participants are enacted as patients and research subjects at the health care clinic where the trial participants come to take part in the actual trial. Through the description it will become evident how these different enactments give a more complex picture of what trial participants ›are‹ in clinical trials.

Case 1: Recruitment and trial participants as employees or preventive selves The first example of a site where trial participants are distributed is at a student-future employer event at a Swedish university. The event was organised by university teachers and labelled »Sustainable Work Life«, with the purpose of providing a platform for students to meet with local organisations and companies constituting potential future workplaces. Organizations and companies have been allotted space in the large exhibition hall of the university for display cases at which two to four people are representing each company or organisation. Many kinds of employers are represented, many from the health care sector. At one of the display cases one woman and man representing a CRO are standing and talking with a student who has walked up to them. The student signs a form,

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takes a pen with the company’s name on it from a bowl, and later walks away. Later in the day, parallel conference sessions are held both by researchers, students, and by the companies and organisations. I talk to a nurse working at the company after her session about the procedures involved in the clinical trials they perform. According to her, it is mostly students that volunteer to participate in the trials, but also older people and the unemployed, i.e. mostly those who need the financial compensation given for participation. The students are a good target group, she says, since they can use the time spent in the clinic studying. Being visible to student groups is therefore important for the company in order to have access to trial participants. I ask how they deal with the well known problem of participants dropping out of the trial (i.e. Jadad 1998), and she says their strategy for keeping students in the trial is to »make it feel like it’s a job« to which they arrive on time and for which they receive a salary. The CRO may well be a future employer of university students, as was the impression I was given by the setup of the display cases and as suggested by the theme of the event, but not in the sense I first imagined when I first entered the exhibition hall. The setup of the event and the short communication between the company representative and the student in the exhibition hall, taken together, can be said to enact the students signing up as interested in participating in clinical trials as short term employees. Such an enactment of trial participants is of course only one out of several other ways to recruit participants. There are other examples that I have come across such as developing an advertising campaign involving a television commercial, billboards in public areas and leaflets in clinics, which alluded to the common desire to lose weight. In these studies that alluded to the will to lose weight no financial compensation was given other than reimbursement for travel expenses and a lunch voucher at each visit. The participants in these recruitment practices are therefore enacted as something other than employees. One could say that they are enacted as individuals who are aware of their weight as a health risk, i.e. what may be termed preventive selves (see Mathar, this book). Who the willing participants are has been analysed within a U.S. context, where sociological research on clinical trials has

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shown how they constitute specific segments of the population (Epstein 1996; Fisher 2007b). In the U.S. context, this has implicated that the pharmaceutical industry has taken advantage of those parts of the population who lack income and/or health insurance, by means of giving them income and access to the health care implied in trials. In Sweden, where all legal citizens in principle have the same access to health care, citizens do not have similar incentives to participate. Hence, providing health care is not a good enough argument in order to find people who want to participate in clinical trials. That does not mean that care is abundant, however. A representative from the Swedish society for overweight and obese, Överviktigas riksförbund, complained that there is too little resources to care for the obese, and pointed to the fact that most care is in the form of clinical trials (interview in November 2001). Care for those that are obese with serious health problems is not abundant and there are no treatments that effectively make people lose weight. What is left for this group is to sign up for participating in clinical trials. However, the narrow inclusion criteria for participating in clinical trials can sometimes exclude those that need treatment the most, since too many coexisting risk factors or problems in one group will make it less homogenous or stable, making data difficult to analyse. Therefore, participation in clinical trials for obesity and diabetes can be seen more as preventing healthy people and people at risk from becoming ill. In this sense, clinical trials for obesity and diabetes is more prevention than treatment. Giving pharmaceutical companies access to participants requires extensive recruitment practices. One CRO, whose webpage is included in the study, expresses the way it works with providing large pharmaceutical companies with access to patient populations, like this: »[We have] long focused on ways to eliminate the all-too-common startup and recruitment delays that hamper so many clinical studies. To that end, we have established an exclusive database of high-prescribing US investigators, exclusive partnerships with high-performing sites worldwide, and a network of investigators in non-traditional regions with few competing studies.«

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This excerpt gives a picture of how the CRO frames the value of the work they perform when communicating with large pharmaceutical companies. This shows what they think the pharmaceutical clients look for, namely not only investigators willing to do the study, but also investigators who have a track record of prescribing the medication they have been involved in testing. Furthermore, they point to having exclusive partnerships with sites that have a track record of conducting successful trials. Finally, it communicates that they provide access not only to patient populations but to sites where there are few other studies being performed to compete for their attention. In this sense, access to trial participants is one of the company’s major assets; and further down the webpage this asset is made explicit as »involving well over 2.5 million patients«. In this way CROs produce what the pharmaceutical industry describes as ready-to-recruit populations (Fisher 2007a): a number of people who easily can be enrolled in clinical trials. The focus on access to trial participants is also evident in the same company’s promotion material aimed at potential pharmaceutical clients. It is not enough to just find people who are willing to participate in a trial; the participants also need to have the right physical profile for the drug being tested. Often, large and costly screening procedures are needed to find a homogenous enough trial participant group. CROs need to be innovative in recruitment practices in order to achieve recruitment goals, since access to patient populations is one of the most important assets for which their pharmaceutical clients hire them. This means finding a number of innovative ways to recruit that makes them want to participate, each enacting the trial participants in potentially different ways.

Case 2: Screening participants and managing trials at the CRO office: trial participants as material resource The second example of how trial participants are distributed comes from the practice of screening participants in order to find the amount of participants needed for the trial results to be statistically significant. Figure 1 gives an overview of how this screening process was done in the obesity and diabetes trial. A

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big challenge was that tests were to be done on participants who had newly developed type 2 diabetes (defined as blood sugar levels above 7.8 mmol/L). One of the tasks of the CRO that was attending the student event, according to their promotional material aimed at pharmaceutical clients, is to recruit ›naïve‹ and ›newly debuted‹ participants. This means screening large amounts of individuals in order to find those who do not (yet) know that they are ›at risk‹, so that ›newly debuted‹ individuals can be recruited. Finding these persons who have an indication of which they are not aware requires special screening methods. Since obesity and to a lesser degree overweight, are known albeit debated risk factors for developing type 2 diabetes, finding naïve participants can be done by screening obese and overweight individuals. The inclusion criteria was set to a BMI between 27 and 50 (where overweight is defined as over 25 and

Figure 1: The Screening Procedure

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obesity over 30) and 35.000 individuals1 who fit these and other inclusion and exclusion criteria were screened, none of whom had been in contact with the hospital because of diabetes previously. These criteria are also, and perhaps less self-evident, used for the purpose of having a more homogenous study population with as few »confounding factors« (Lemne 1991/1997: 29) as possible, that is factors that can affect or disrupt the result in any way. The group of patients finally enrolled in the trial discussed here is thus a relatively homogenous one: a group having a BMI defined as risky but not necessarily being ill. These ca. 35.000 individuals, in turn, were gathered from the database owned by the CRO, and were screened by measuring their weight, height, blood pressure and blood sugar level (HbA1c) in a five week period. This first testing of blood sugar level screened out ca. 30.000 individuals, leaving only about 5.000 to continue the screening process. Those participants left were informed that they had blood sugar levels above normal, but that more testing was needed to be sure. This information came as a surprise to several participants as they were transformed from ›naïve‹ to ›newly debuted‹. The next step for them was to go through a physical examination to see if they were still eligible for the study, in line with the inclusion and exclusion criteria. A number of steps later, including another more precise blood sugar test called OGTT2, finally left 550 participants that fit all the criteria and were still willing to participate. Those that did not make it that far were given information on where to get help with their newly debuted diabetes and the 550 individuals left were now given the possibility of testing a drug that would potentially lower their blood sugar levels. It is these participants who are randomised to get placebo or the active substance and to go along with the actual testing of the drug. During the enrolment visits up to the randomisation, participants who experience problems with using the drug or in other ways are not ›compliant‹ can be excluded, making it possible to have better throughput, or flow, of participants in the study (see Jonvallen 2009 for a detailed account of this 1 2

These numbers are rounded. Oral glucose tolerance test

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process). The participants who reach randomisation are more likely to stay ›compliant‹ throughout the whole of the trial, thereby lessening the risk of many drop-outs. Taken together, these practices can be seen as a way of manufacturing a solid group of participants for the actual testing phase. Once the trial participants have been randomised into the trial, the CRO’s software is used to keep track of the extensive testing those participants still fitting the trial’s inclusion criteria go through. The 550 trial participants are divided between 20 different sites in Sweden and are scheduled to go through 20 visits at the respective clinic where more than 30 different tests and measurements and information are to be done and collected. Managing these practices and coordinating the work between different personnel at different sites is a major endeavour. To find trial participants fitting the narrow inclusion criteria is thus an arduous process made easier with the help of the software provided by the CRO. The software system and those computer scientists employed by the CRO working with it bear similarities to other industrial production processes, and similar types of software are used to manage a number of industrial processes. In the use of the software, then, the volunteering participants become enacted as the ›raw material‹ that is processed in order to produce the data. The 550 participants needed to conduct the trial are a carefully crafted group of participants, or refined raw material in terms of industrial production. In this sense, the trial participants are enacted as a material resource in the pharmaceutical production process.

Case 3: The clinic and enacting the trial participant as a patient and research subject A third example of how trial participants are distributed is taken from the practices performed in the clinics by the trial nurses, doctors and dieticians who are the ones seeing the participants at every visit to which they come. At the clinic where I did my ethnographic data collection, the participants are variably referred to as patients or participants: »We say patients but are supposed to call them participants«, one of the nurses explained to me. However, it was clear that it was impossible to draw the line between these two categories, and the use of

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either of the two terms often seemed arbitrary. In talking to me personnel sometimes corrected themselves when they referred to the participants as patients. The switching between the use of the terms participant and patient underlines the multiple ontologies of the category »trial participant«. How the participants themselves handle this duality needs to be researched further, but my observations indicate that being a participant is less comfortable than being a patient. When discussing with one nurse how she deals with the informed consent papers having to be signed (not only once, but each of the seven times there was an amendment to the trial protocol), she admitted that it was difficult motivating to the participant why this had to be done more than once, and the problems involved in explaining the details of the trial to the patient/participant. The participant’s reaction to her information about how the new amendment changed the planned procedures was one of surprise and lack of interest, which gave the nurse a feeling that the patient was not focussed on the details of the trial per se, but on his own progress in losing weight. The nurses, participants and the practices performed between them seem to have successfully enacted the participant as foremost a patient. Taken together, these examples signal the shift in social meaning of clinical trials mentioned by Epstein (1996): that the social meaning of the clinical trials has changed from being one of research to being one of care. From my observations of the practices performed by nurses and dieticians in the obesity and diabetes trial, the participants were enacted as patients in the sense that they were asked about their health, getting regular check-ups, giving blood and urine samples, and were given dietary advice, all things that are part of what can be seen as regular obesity and diabetes care (with the important difference that the pharmaceutical company, through the CRO, pays the clinic to do this). Trial nurses, doctors and dieticians were all treating the participants individually and giving them advice on issues that came up. These issues revolved around a number of different things, from diet and exercise to more personal issues that were seen as important for the individual’s motivation to lose weight and stay in the trial. Trial personnel kept double journals on the participants: one regular medical record, as used in the com-

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munal part of the clinic, and one case report form that was part of the data collection of the trial. In this sense the trial participants were enacted both as regular patients as well as research subjects in the practices performed at the clinic, but in the everyday work, they were most often referred to as patients.

Coexisting multiplicity So far, the different rationalities behind the practices enacting the trial participant as employee and preventive self, resource, or patient and research subject may seem to be distributed in a manner that does not create much tension. The presentation has so far focussed on enactments performed in different sites and practices, which gives a picture of it being possible to have different enactments going on simultaneously as long as the sites are kept apart. The different distributions I have described keep the different enactments of the trial participants as a single object apart. When talking to the personnel at the clinic, however, it became clear that there is some tension connected to the different enactments, and that it is impossible to keep a clear line of demarcation between the sites and practices. For example, a few of those that I interviewed considered the work to be too oriented towards research instead of care. One of the dieticians did not regard the practices involved as »meaningful«, particularly due to the standardized character of the tasks performed. A nurse expressed concern over what happened to the participant once the trial was over. She was concerned over the abrupt change of not having access to their care once the trial was over. A medical doctor was concerned over the anxiety a diagnosis of type 2 diabetes produced in those individuals who were found to have high blood sugar levels but were not included in the study. Another medical doctor was of the opinion that the nurses’ care work was exploited for private industrial purposes. These tensions can be seen as related to the different rationalities of industrial production and communal health care that are both involved in how clinical trials are organised. Mol’s focus on the coexistence of multiplicity implies an interest in how the perceived unity of an object comes to be an

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accomplishment rather than a starting point for treatment. Her interest, she states, is not on how multiplicity creates clashes between different practices. Instead, she gives priority to understanding how seemingly different practices with different underlying ontologies still add up to ›good‹ health care. She is thus more interested in how and why things work even though they have different ontologies. I have shown some ways in which the category of trial participants as a group is not a unitary entity, and how the group is enacted in different practices. The participants are distributed into being short-term employees or preventive selves on one occasion, as a material resource, and as a patient and research subject (with inherent risk or disease) in another. How are clashes between these different sites and practices avoided? According to Mol, clashes and confrontations between the different ontologies are avoided because the sites where the practices occur are kept separate. This separation is not total, however, something that becomes evident when talking to those that move between the different sites. Individual doctors or nurses who do so have to make sense of the different enactments. Doctor Maria, for example, was working with the patient examinations in the trial. This means she examines the patient participant to see if he or she is having any side effects, and assesses the participant’s general health. The work also included filling in the case report forms that enable a standardised assessment in order for comparison and analysis of side affects to be done. Examination of the trial participants was a practice associated with treating the participant as a patient, while filling in the forms was a practice having to do with the management done by the CRO. That she has concerns about the clash between the practices of research and the practices of patient care is expressed in the following way: »It is important that the papers are filled in properly, but, […] you are primarily the patient’s advocator and doctor. But then I’m not […] responsible for some kind of enterprise, for how much funding that has to come in, or something like that. So I can liberate myself from these things that can affect how you perceive the job you do […]« (Maria, medical doctor)

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In talking about the examining doctor’s role in the trial, this excerpt illustrates how Maria negotiates and balances between the formalities of the trial and patient health issues, when and if they are in conflict. She has had a more research active role previously, in another trial, and her statement can be seen as a reflection on the differences involved in a research active and clinical role, respectively. In Mol’s terms, she sees that the object enacted does not cohere. Since she is only working with the clinical assessment and not involved in the CRO or directly with the pharmaceutical company, she implies this choice makes it easy for her and that it may be less easy when you are involved in practices related to managing the trial according to plans or being in charge of the trial as a whole. Separating the practice of »filling in the papers« (research administration) from the practice of being »the patient’s advocator and doctor« (patient care), and making a hierarchy between them, enables the coexistence of the participants as patients with participants as research subjects. In talking about differences between doing clinical trials and doing care, medical doctor Mats makes a similar distinction between academic doctors and clinical doctors, that the practices involved in each are difficult to fit together: »It’s enormously demanding keeping track of all this, except for on the level of common sense, the best for the patient, and being accurate and so on… but when you need to go into all the small details about how this is to be done and managed, it’s a lot… and if you increase your knowledge in that area you do it at the cost of methodological skills or something else. I mean that’s what happens to academic researchers – they’re not good doctors anymore. It’s like you’re either a bedside doctor or a paper doctor. Nowadays.« (Mats, medical doctor)

This excerpt shows how doctors somewhere along the way make a decision or end up in either the category researchers or the category clinical doctors, signalling that the practices of each need to be kept apart in order to coexist. Another example: The clinic where I did my ethnographic fieldwork was divided into two parts when one of the first large clinical drug trials, was started. The scale of this first project required more space than was available in the clinic, so

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possibilities of expanding the clinic were examined. The basement under the clinic was remodelled from a storage area into office spaces, consulting rooms, a coffee/lunch room, lab room and conference room. This renovation was paid for by funding from the pharmaceutical industry. Keeping the activities of the public clinic and the private drug trials separate served not only the need for extra space to start with the study. Another function the division served was to keep publicly funded health care separate from private industry drug trials, something that Paul, professor of the department and stockholder in the CRO, said he saw as a way to prevent discussions around where the boundaries between private and public interests go. This demarcation is important in order to prevent claims that the industry profits from public health care through the use of its equipment and staff. When discussing the controversy around the establishment of the CRO at the clinic and the drug trials in general, the professor mentions the spatial separation of the clinic’s communal activities and the clinical trials, where the latter was located in a different part of the hospital. Such a spatial separation was to keep the activities separate and to signal that the clinical trials were connected to the university research and not to communal care. In Mol’s terms, such distributions separate what might otherwise clash (2002b: 115).

Coordinating multiplicity to end up with ›good care‹ I have shown how multiple trial participants are distributed, and will now turn to how these different enactments of the trial participants are coordinated in order to seem a coherent category. How is this done in the obesity and diabetes drug trial? When I interviewed the professor, Paul, who was responsible for many of the studies that went on at the clinic, as well as for the general reputation of the clinic, he was very aware of the criticisms voiced by personnel that were geared towards the CRO and clinical trials in general. Being in a position where he has to account for all the practices at the different sites, making sure that patients receive ›good care‹, and that the industry

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does not profit from communal care, he ponders the merits of having clinical trials in the first place. In quite a defensive tone, signalling he has heard a lot of critique, he explains: »These studies see more patients than we have resources to through public funding. The drug trials imply health care while being a study… and often much better health care than what is offered by the public clinics. So the volume of obese patients that are taken care of here at [the university hospital] is more than doubled thanks to the studies going on. So… [the public] pays a certain amount for the care that patients receive through the [communal] clinic, but in addition they receive an even larger volume from the pharmaceutical industry for free. Well, … these patients wouldn’t have come if it weren’t for these studies, but they would instead be standing and knocking on the door and demanding attention in some other part of the health care system.« (Paul, professor and Head of Department)

The enterprise of clinical trials is thus legitimated by the public lack of funding for obesity and diabetes care. In order to meet the critique aimed towards obesity and diabetes drug trials, Paul argues that the public health care system gets obesity and diabetes care for free (twice as much as it pays for), and that it could never afford the same amount of care without privately sponsored drug trials. In this sense, trials are legitimated because they deal with participants as patients. He later makes a clarification of his statement and says that the patients would not have come if it were not for the studies, but says it is likely they would demand attention in some other part of the health care system had they not been recruited and screened for this particular trial, implying that people with obesity are a high risk group when it comes to a number of other diseases, including diabetes. In this sense, the trials are framed as serving a preventive function, which prevents people from first seeking health care only when they perceive themselves as ill. The trials, he implies, find people at risk long before they are aware of being at risk or ill. Thus, he also legitimises clinical trials by claiming that they imply large scale preventive measures implicated by recruiting healthy people (i.e. ›naïve‹ and ›newly debuted‹). In this sense, trials are legitimated because they do good for the population and society as whole, by way of dealing with participants who are preventive selves. What he is

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saying can be viewed as an effort to coordinate between the different ontologies of trial participants as they are enacted within clinical trials.

Conclusions I have shown how the category trial participants is multiple. The notion of multiplicity has enabled this analysis of how participants are enacted within the practices of clinical trials. In recruiting students at the student event and keeping them and others recruited interested to stay in the study, the participants are enacted as employees. In the marketing practices of the CRO towards the potential pharmaceutical clients, and through the practices involved in the process steering of the trials, the group of participants are enacted as a material resource in the part of the pharmaceutical production process that clinical trials constitute. This while at the same time, at the site of the clinic, the participant is enacted as a patient and as a research subject. By extending the analysis of how participants are enacted to the wider organisation of clinical trials (i.e. including an analysis of how CROs enact the participant), tensions in clinical trials become more visible. In this sense, ›structural‹ changes in the organisation can be included in the analysis. Coordination is what makes the multiples coincide. Those that would demand attention in another part of the system, going back to Figure 1, are no less than ca. 5.000 individuals. 550 of these get what Paul refers to as care in the form of a study through participating in the trial. Those remaining are left with newly acquired knowledge about being at risk, and told where to go if they want help lowering their blood sugar to a non-risk level. This is the preventive measure supplied as a side effect of the trial. My tentative argument, then, is that the social meaning of clinical trials has changed not only from being one of research to being one of care (Epstein 1996: 197) but is shifting to being one of prevention. Part of this shift, I suggest, can be attributed to the increased pressure for CROs to supply a steady access to ›patient‹ populations by supplying steady access for pharmaceutical companies to individuals that are unaware of being at risk.

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More research needs to be done to see if the search of these ›naïve‹ and ›newly debuted‹ populations is a general and increasing trend, and also to establish in what areas of risk/ disease this strategy is used. The implicit prevention programme implied in this particular obesity and diabetes trial was geared at 5.000 individuals, but there are many similar trials going on and access to data about these are difficult to obtain due to the industry’s »culture of secrecy« (see Lexchin 1999). In understanding prevention programmes in practice it is important to acknowledge that prevention programmes can be unanticipated results of a pharmaceutical production process. This suggests that it is difficult to clearly distinguish the realms of clinical trials, health care, industrial production, and prevention from each other. Instead, they are intertwined and difficult to define a priori. Another question is whether this implicit prevention programme can be seen as ›good care‹, or indeed, ›good prevention‹. In other words, are the 5.000 individuals better off knowing about their medically defined state of risk? Is this a good way of doing prevention?

References Epstein, Steven (1996). Impure Science. AIDS, activism, and the politics of knowledge. Los Angeles & London, University of California Press. Fisher, Jill (2007a). »Governing Human Subjects Research in the USA: Individualized Ethics and Structural Inequalities« Science & Public Policy 34(2): 117-126. Fisher, Jill (2007b). »›Ready-to-Recruit‹ or ›Ready-to-Consent‹ Populations?: Informed Consent and the Limits of Subject Autonomy« Qualitative Inquiry 13(6): 875-894. Jadad, Alejandro (1998). Randomized Controlled Trials. London, BMJ Books. Jonvallen, Petra (2009). »Compliance revisited: Pharmaceutical drug trials in the era of the contract research organization« Nursing Inquiry 16(4): tba. Latour, Bruno (1993). We have never been modern. New York, Harvester Wheatsheaf.

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Law, John: (1991). Introduction: monsters, machines and sociotechnical relations. A Sociology of Monsters: Essays on Power, Technology and Domination. John Law. London, New York, Routledge: 1–23. Layne, Linda (1998). »Anthropological approaches in science and technology studies – introduction« Science, Technology & Human Values 23(1): 4-23. Lexchin, Joel (1999). »Hear No Secrets, See No Secrets, Speak No Secrets: Secrecy in the Canadian Drug Approval System« 29 1(167-178). Mirowski, Philip and Esther-Mirjam Sent (2007). The Commercialization of Science, and the Response of STS. The Handbook of Science and Technology Studies. Olga Amsterdamska, Judy Wajcman and Edward Hackett. Cambridge, MA, The MIT Press. Mirowski, Philip and Robert Van Horn (2005). »The Contract Research Organization and the Commercialization of Scientific Research« Social Studies of Science 3(4): 503-548. Mol, Annemarie (2002). The Body Multiple. Ontology in Medical Practice. Durham, Duke University Press. Oudshoorn, Nelly (1994). Beyond the Natural Body: An Archeology of Sex Hormones. New York, London, Routledge. Parayil, Govindan (1999). Conceptualizing Technological Change: Theoretical and Empirical Explorations. Oxford, Rowman & Littlefield. Rabeharisoa, Vololona (2004). On Annemarie Mol’s The Body Multiple: Ontology in Medical Practice. EASST-4S Conference. Paris. Rainville, Barbara G. (2002). »Strategic outsourcing with contract research organizations: Targeting corporate goals« Drug Information Journal 36(1): 77-81.

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Configuring Profess ional Identit y – a Wa y to Renegotiate Good Care KATIA DUPRET SØNDERGAARD

This chapter is about the difficulties in renegotiating and conducting what counts as good preventive care taking Open Dialogue – a psychiatric treatment approach – as an example. According to Sidorov and Seikkula, two pioneers in the development of this approach – the difference Open Dialogue makes is the following: »In the traditional psychiatry in our countries, as in many other countries in the western hemisphere, symptoms and deviant behaviour of the patient are seen as expressions of a disease inside the patient. Such symptoms and behaviour is expected to be reduced and controlled through different means, of which neuroleptics have been widely used. What we brought were other assumptions how such symptoms and behaviour can be understood, and other ways to handle them. In practicality we brought our experiences of participating in free and open discussions where all who wanted to be heard were offered the possibility to be heard. We see symptoms and behaviour as opening possibilities for the conversations we take part in with the patients and their relatives.« (Sidorov and Seikkula 2003: 12f)

When reading between the lines of this quotation, one can see a reflection of critiques from the social sciences in this concept of psychiatric treatment: many of the usual psychiatric treatment approaches, including the concepts of care and prevention, and

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the usual health professionals’ practices have been criticized for applying an objectifying rationale, which means that they are patronising patients, derive from the necessity to save money, etc. Defining care, treatment and prevention in those terms has been judged to be ethically rather problematic (e.g. Foucault 1973/1979; Illich 1976b; Scheper-Hughes and Lock 1987) or for mixing matters of economic and neo-liberal arguments, framed in terms of individual choice, with understandings of care practices (Mol 2008). This critique does not quite fit an Open Dialogue approach. The approach is designed as a tool to renegotiate ways of professional working and approaches to the patient. The Open Dialogue approach is meant to offer an alternative in the sense that from its outset it is based on social constructionist language theory (e.g. Gergen 1985) and has a network-based approach inspired by systemic therapy (Selvini Palazzoli, Boscolo et al. 1980). These two primary sources of inspiration give psychiatric staff the opportunity to work with an approach that helps them to rephrase governmental technologies (Foucault 1979/1973; Rose 1998; Dean 1999) and hierarchical positions. This means that, ideally, choices of care and prevention and asymmetrical positions, are distributed within the networks of the patient’s relatives and friends, and among the participating staff members. The fact that the Open Dialogue approach is inspired by social constructionist language theory gives rise to the staffs’ expectation that diagnostic objectifying language will be marginal. The Open Dialogue treatment approach thus seems to aim for a more democratic, liberal and inclusive preventive care in a way that is defined by what may be termed as the ›emancipated post-modern patient’s wishes‹. However, the analysis presented in this chapter reveals that this is difficult to achieve, despite the staff members’ respectful aims to develop non-objectifying preventive care i.e. democratic and inclusive care. In this chapter, I analyse the problems involved in applying a treatment approach that is attempting to do preventive care without conducting objectifying and economically argued practices. By drawing on a praxiographic approach (Mol 2002a) and the STS heterogeneity concept, I present an understanding of preventive care as performative and heterogeneously distributed. This means that developing preventive care is not a mat-

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ter of identifying the powerful centre of execution of care, but rather encountering the myriad of things and people that comprise the daily performance of care. In the following, empirical work from an outreach team from Southern Denmark that wishes to introduce an alternative care practice will be explored. The team wishes to practice care that is not objectifying, and construct a vision of good preventive care as being more democratic and inclusive than the practices they see themselves as rejecting. The analyses presented in this chapter are discussing ways in which the staff performs1 this ambition. More concretely, the study explores the work involved in dissolving expert roles and engaging with dialogical language and principles. Through recent concepts from Science and Technology Studies and a focus especially on human/nonhuman configurations in care, this chapter explores the assumptions of Open Dialogue enabling non-objectifying and democratic preventive care practices using the following argument: what makes up preventive care is not determined by demarcated singular actors, like the powerful (objectifying) psychiatrist or the neo-liberal focus on individual choices. The first example shows how specific configurations of materials and people do align with the ambition of dissolving stereotypical hierarchical positions. The second example shows how other configurations of people and materials produce difficulties maintaining this alignment when management responsibilities also enrol in the configuration. Lastly, the third example shows that different health care principles do not necessarily have to be tensional, but can indeed be non-conflictual in spite of the fact that not all actors are aligned. Concluding, the chapter suggests that in order to explore the importance and potentials of preventive care it is fruitful not solely to take into 1

The use of the term ›perform‹ in this context is not to be associated with either the Goffmanian definition of the term referring to an underlying reality, or to Butlers term ›performativity‹. Mol (2002) has suggested an alternative term ›enact‹. However, both Elgaard Jensen (2001: 88) and Sørensen, (2003: 31) have argued extensively on maintaining the term performance to define »unbounded, materially heterogeneous, recursive processes or patterns that can be imputed to the social« (Elgaard Jensen 2001: 19) and signifies the practical work that is done in the outreach team.

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account social matters, but also material ones. Second, with the matter of course that differences exist in preventive practices this chapter suggests that a socio-material approach is not necessarily tensional but can also be non-conflictual. However, this poses challenges to staff as to how to navigate in these differences. This chapter explores how this is done.

Introducing the Open Dialogue treatment approach The Open Dialogue treatment approach has its roots in Northern Lapland. It took of in the mid 1980s with a similar motivation to that of the staff in the present case, namely to create an alternative to the existing psychiatric practices (Andersen in Seikkula 2000: 9). The approach was formulated in consultancy with families that were not satisfied with the existing arrangements of treatment and meetings. At the beginning of the 1980s the psychologist Jaakko Seikkula and consultant psychiatrist Jyrki Keränen developed the Open Dialogue approach in the emergency psychiatric services and later the whole psychiatric services in Western Lapland which had 72.000 inhabitants. They changed the form of meetings and more families were willing to participate in the treatment meetings. Later they also moved the network meetings to the patients’ home. This is, however, a stage that the group of staff encountered in the present study had not yet reached due both to ways of organising the work and the team’s decision on what to introduce and how to introduce the Open Dialogue approach. The Open Dialogue approach revolves around seven principles; instantaneous help, dialogue, social network perspective, responsibility, flexibility and mobility, continuity and enduring insecurity (Seikkula and al. 1995; Seikkula, Alakare et al. 2000; Seikkula 2000/2002; Seikkula, Alakare et al. 2001; Seikkula and Olson 2003). Generally, these principles are defined differently from those currently being applied in the governmental funded healthcare systems, which are based on diagnostic measures and »best-practice«-models reflecting clinical and cost efficien-cy. The Open Dialogue approach wishes to dissolve expert positions and be a facilitator for the patients to

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let them define prevention in their own terms. As such, prevention is a way of rethinking the relation between patients and professionals and therefore constructing what can be called a very different patient-professional relationship from governmentally funded mental health care approaches: a concept that is not based on a set of statistics or stable parameters, but one that is trying to develop a language and practice for how to meet human beings not patients, first. The preventive aspect is thus, for example, that the development of a communal language will bond together the patient’s network and thus make it stronger and more supportive in future crises as well. This, according to the Open Dialogue performers and developers, does not necessarily mean neglecting their need for relief and care. For my study, I analysed the work involved in realising this concept of the Open Dialogue approach in practice. The team described is connected to approximately 100 patients primarily with a diagnosis of schizophrenia. It is a multi-disciplinary outreach team that at the time consisted of a consultant psychiatrist in charge of treatment, a psychiatrist, a psychologist with a systemic therapeutic background, a team leader (nurse, with administrative responsibilities), a psychiatric worker, a social worker, a social- and health care worker and a secretary. In the time period I met the team, they were trying to institutionalise the Open Dialogue approach in their daily work. This was an activity that largely took place in study group sessions, i.e. a get-together where a special framework for the whole group of staff was set up in order to jointly practice and discuss Open Dialogue. The empirical situations referred to in this chapter are from such study group sessions. Importantly, study group sessions were conducted without patients; they were initiated by professionals in order to build up their confidence and knowledge about how to perform Open Dialogue before engaging with it in ›real‹ practice, i.e. with patients. As already mentioned above, the ideal of prevention in this treatment approach is connected with the change of the professionals’ approach. This is the starting point. Becoming an Open Dialogue professional can be a project of finding one’s own integrity in terms of new ways of governing one self, i.e. the reformulation of governmental technologies. I will explore how situated and local performances of these treatment ideals, in

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particular how dissolving the role of experts, have complex constitutive effects and create alternative subject positions for the professionals involved. In other words, I will discuss how performances of psychiatric members of staff2 are connected with the performances of Open Dialogue’s principles and practices of ›good care‹, which are conducted as new governmental technologies.

Theoretical background Several researchers have approached the investigation of professional identity with theoretical inspiration in Science and Technology Studies. For example Elgaard Jensen (2001) investigates how social workers become assessed as competent through different kinds of ordering processes; furthermore, Law and Moser (1999/2003) write on how managers and management get defined, through for example spread sheets, that analyse the organisation’s performance. Gherardi & Nicolini (2002) and Orlikowski (2002; 2006) use an STS angle on professional knowledge acquisition within a practice community theoretical approach. These researchers attempt to a varying degree to carry out analyses that are sensitive towards encountering things and technologies as co-constituting professional subjectivities and therewith reflect a point made by John Law (1992). Law suggests that a person is not primarily a person because he or she is inherently a body, that carries knowledge, competences and values. Rather, a person is a person because he or she is a clustering of a series of elements (and a body) that reach out in a network of material, organic and rhetoric entities that surrounds the body (Law 1992). I share this approach of the self as non-essentialist and co-constituted in performed practices. Consequentially, I understand professional identities as the effects of ordering practices – such as physical setups, policy papers, historical discourses, health paradigms, professional teachings and experience – and vice versa. One ultimate aim of this chapter is thus not only to de-centre the subject but 2

The terms ›psychiatric member of staff‹ or ›staff‹ are used to cover all professions that work in the multi-disciplinary team.

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to focus on how professional presences are performed through socio-material configurations. In order to investigate what I have described earlier as »the myriad of things and people that make up the daily performance of care« I apply an analytical concept from Bruno Latour (1993/1991). Inspired by »we have never been modern« (Latour 1993/1991) the performance of practices is seen as involving two principal movements. The first movement can be called purification attempts. Purification attempts in the present study are attempts of making socio-material entities directed towards constructing an Open Dialogue treatment approach that is not ›polluted‹. In this context being polluted, then, is when something challenges the ideal of the Open Dialogue approach as it is performed in the practices of the team. Here is an example of how the Open Dialogue approach can easily be challenged by a rather plain or banal thing: ›forms‹ patients have to fill out. There are many forms, patients are asked to fill out. They are covering different kinds of questionnaires on, say, the social functioning level of the patient (Global Assessment of Functioning), the national questionnaire for development of indicators of schizophrenia (NIP), the patient satisfaction questionnaires, the electronic patient journal that is a continuous assessment of the patient and the management monitoring system of the activities in the team. There are further forms that indirectly involve the patient when, the staff writes the assessments and conclusions of the questionnaires feed back on how to approach the patient and provide answers for how to improve care. These forms and technologies challenge the ideal of the Open Dialogue approach as explained by a member of staff: »[It is the existing psychiatry] that has created a whole lot of forms that they [the patients, KDS] have to register, follow and do to get this treatment. So it is possible to argue, that the patients have to function so well that they are expected to be capable of managing and have the energy to fill out all these eternal forms that have to be filled out. This is where I think that with Open Dialogue there are not that many requirements [for patients, KDS].« (Interview with staff)

Hence, this member of staff both criticises the ›forms‹ and suggests Open Dialogue as a more convenient alternative for

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patients. My present analytical focus, however, is the ›forms‹; more precisely, I will reflect on the statements »there are not that many requirements« of functioning well and »have the energy« when using Open Dialogue, because of the absence of ›forms‹. Put simply, I interpret this as an attempt to exclude ›forms‹ from Open Dialogue practice – a process described above as »purification attempts«. Besides being plain documents, forms reflect decisions, diagnostic language, and professional hierarchies and, thus, incorporate specific moral, political and social choices. Importantly, these forms reflect choices that contradict the Open Dialogue ideal and therefore need to be purified in order to better perform the latter approach. This means that purification is not only a matter of excluding certain types of materialities like forms. It is also a matter of assembling different kinds of (human and non-human) actors and making them point in the same direction (this argument is inspired by (Elgaard Jensen 2008). It should be noted that this interpretation of purification is slightly different from that which Latour proposes with the concept. Latour does talk about a division between orderings, but it is a division between human and non-human, culture and nature. My use of the term is still about divisions, but it is rather about divisions that establish ideal modes of ordering or what has elsewhere been called »regional orderings« (Mol and Law 2001). These are orderings with clearly marked borders, ideals so to speak, but unlike the point with Latour’s divisions, they are still heterogenic. Importantly, however, this does not necessarily mean that purifications are processes that discipline and govern all actors present in a clear, calculable direction. As I will show in one of the empirical examples in the next section, there are situated ways in which the different actors connect and fit together and what is then performed as a result of this unified direction.

Examples of performing Open Dialogue The three empirical sequences presented in this chapter are all taken from study group sessions in which I participated where the team members met every other week to discuss and practice

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Open Dialogue principles. In these sessions the personnel discuss how they should interpret Open Dialogue elements; for example, they discuss what it actually means to have a dialogue with the patient. Further, they also practice Open Dialogue principles, by for example making so called »rounds of association«, where each member of staff talk in turn without judging or commenting directly on what has been said, but say aloud what is on their mind and what the conversation has inspired them to think about. But before going to the actual analytical sections the reader will be introduced to the team. In order to do so, a short illustrative description of the study group session is given. It is the description of a study group session that took place for about two hours every second Monday morning. In the following is described how a study group session would usually be run. »The meeting room on the first floor of the office building is arranged for the study group sessions with chairs in a circle and no table in the middle. The room is connected to the offices of another outreach team by a long corridor. The meeting room is used by both teams. The team’s psychologist is in charge of the video recording. The team is recording the meeting for the purpose of its own learning process, rather than for the research. Staff members usually arrive more or less together, sometimes waiting for one of their colleagues just having to finish some work off in one of the offices down stairs. Having a hot drink during meetings is important and they usually bring their mug with them with coffee, and maybe a bottle of water. But this is the only accessory people bring along that in some way takes part in the session. For example, a paper describing a patient may be briefly included, but papers very seldom participate in the study group meetings. Mobile phones, calendars, postit notes and pens tend to be kept out of the room. During the session the group take a collective decision on what to talk about. The theme of conversation is about their relations with patients and their experiences with and thoughts about the Open Dialogue approach. The regular recurrence of this meeting is expected to avoid the usual hectic and highly contingent practices going on outside the room. Calendars and similar tools are regarded as connections to and reminders of other obligations, but they can be excluded exactly because of this recurrence.« (This description is a compilation of fieldnotes).

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The little accessories the staff bring into the room coupled with the circle of chairs, the absence of a table and the attempt to disregard the temporal framework of the meeting manifests the exclusion of the specific mentioned materialities and habitual practices and is at the same time performing what could be called the most purified version of the ›how‹ and the ›what‹ of Open Dialogue in present case.

First analytical example: Dissolving expert positions through material exclusion One of the basic aims of Open Dialogue, as already stated above, is the dissolution of the expert position. But how could that possibly be achieved? Team members emphasise the importance of being human before professional (interview with social and health care worker, July 2006); they say that it involves being reluctant to use diagnostic language because diagnosis is regarded as a result of a problem not its origin and using diagnostic language therefore takes agency away from the patients rather than giving it back to them (interview with psychologist, Aug. 2006). Dissolving expert roles also involves being non-judgemental (video of supervision session) Dissolving expert roles involves a whole lot more. However, in line with an STS inspired approach, I would like to stress another dimension that staff themselves do not stress, namely the performing of materialities. In the following sections, I am arguing that chairs in circles, and even absent things like calendars are co-constitutive of dissolving expert roles. I wish to develop this point by reconstructing one empirical sequence; more precisely, I am analysing the physical setup and rhetoric in the study group room and paying special attention to how this alone results in the flattening of hierarchies which is a movement towards the dissolution of expert positions. The following description is taken from the room used for the study group meetings. As mentioned in the study group description above the chairs are always placed in a circle. The staff members mostly sit relaxed with their backs against the chair, their hands on their lap, often with their legs crossed. When talking, arms and hands gesticulate and are sometimes placed behind the back of the chair. There is an absence of a table, an

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absence of calendars, and (most often) an absence of papers. This is in general terms what is the habitual bodily and physical setup that the team has established for practicing Open Dialogue. The way bodies are present and the exclusions of specific materials are in agreement with the ideals of Open Dialogue where predefined decisions and guidelines of content of conversation should be avoided, and where the way to be a professional is through human interaction (which therefore calls for a body language that is open, inviting and ready to listen). But exploring the room in more detail: how is the dissolution of hierarchical positions made available? In a first reading, I would say that the absence of a table is an exclusion of a materiality that, in one reading, foregrounds human interaction and the establishment of trust. The way speech circulates in the room suggests the braking down of stereotypical hierarchical positions. There is for instance, no clear manager directing who should speak when and about what, as in chaired meetings with written agendas. The absence of written agendas also means that anybody can decide what should be the focus of the discussion. At first sight, the connection of material and bodily presences and absences in the room suggests a particular reading of what is going on. These presences and absences have certain effects that facilitate the definition of how to define the performance of the Open Dialogue approach. The circle of chairs, the listening bodies in the circle, the circulation of conversation, the absence of tables, calendars, mobile phones, questionnaires to fill out and so forth. This configuration helps to ensure that the nature of the discussions often circle around how to define the purpose and meaning of Open Dialogue principles such as ›respect‹ and ›dialogue‹. The fact that materials and governing technologies that have a tradition of transporting singular knowledge claims are excluded from the room is facilitating collectivity. Therefore tolerance towards multiple interpretations and understandings comes to the fore. Singular knowledge claiming materials are the ones described earlier: questionnaires, diagnostic measures, written down agendas, hierarchical positions, etc., i.e. materials and governing technologies that are historically configured in ways whose purpose is to first come up with an answer to a problem and second to exclude right from wrong answers. Their purpose is to narrow down the proba-

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bility of doubt in order to be able to take decisions on how to act accordingly. The reading of the presences and absences in the room also facilitates diagnostic avoidance: The fact that the team does not use diagnostic language, when describing the patient or the problems of the patient, has an effect. But it is also the physical set up of the room that feeds into a performance of the ideals of Open Dialogue. The circle is not a random form. If people were sitting in a triangle or a square, the order of speech would be altered by the form of seating. The distance between people established by the different forms facilitates or negates different types of participation (e.g. Foucault 1973/1979; Sørensen 2005; Juelskjær 2007). A stereotypical image is the manager sitting at the end of the table. In a circle the potential for participation by each member is at first glance equal. The absence of the table and the placement of chairs in a circle are making the levelling of speech possible. The absence of tables and agendas and the placement of chairs in circles are aligned with the ›rounds‹ of conversation. All in all, these described elements co-constitute a purified Open Dialogue setting where the absence of stereotypical hierarchical trails (that would be materialized through written down agendas, the consultant psychiatrist taking decisions, reference to diagnostic symptoms and so forth) and the presence of interpersonal contact facilitates a version of what best psychiatric treatment could be. That means establishing an alternative to configurations that perform singular knowledge claims. This collectivity in turn also interacts with how professionals perform themselves through rephrasing governmental technologies. Importantly this shows an ideal. A purified ideal. For the time being the reader is asked to accept the preliminary stabilisation of this ideal that the circle of chairs is making available the dissolution of hierarchy. This first analysis shows that materialities and forms of interaction enable the potential dissolution of stereotypical expert positions when taking into account the spatial and material components. However, as shall be shown in the next empirical situation – the choreographing of a platform that can dissolve the expert role cannot be maintained as an ideal purified attempt – it also makes other things available than the flattening of the hierarchical positions.

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Second analytical example: Reconstructing professional hierarchies In the previous section I described an attempt of purification within the study group through the arrangement of entities exemplified by the ›round‹, i.e. a specific order of chairs and sitting positions and the absence of table, absence of written down agendas and forms of conversations etc. However, calling it ›attempt‹ has a reason. With an STS-approach to prevention programmes and mental health care as configured here, neither solely materially configured, because things are nothing in themselves even though they are provided agency, nor solely socially configured, because people are nothing in themselves, even though provided agency. In this reading as stated above there is, therefore, nothing anti-hierarchical about the circle of chairs as such. The ideal of anti-hierarchy is, therefore, even through the support of the circle of chairs, and the collective decision making process etc. an ideal construction and is hard to maintain assembled in practice. Purifications are often challenged and when that happens, hybridisation processes occur. Hybridisation is the complex process of making an object or a practice something it was not originally meant to be. It is the consequence of an object’s entanglement with diverse practices, structures, other objects and so forth. In this section, I show how Open Dialogue becomes hybridized as it becomes embedded in the specific study group encountered. The empirical case I would like to draw upon is an incident where a ›round‹ has been suggested. Again, everybody is invited in turn to associate on what has been said. A ›round‹ in this context means that participants in the circle are not to come with judgements or opinions on what should be decided on a given topic. This is important to notice since this seemingly easy task is still open to a variety of participation possibilities. The following fragments are taken from the second half of the study group session after a break. The entire team is present in the room. When settling in after the break, the psychologist starts the video-recording again and the psychiatric worker makes a little joke saying »part two«, as if they were acting in a movie. The psychiatric worker continues talking. The psychiatric worker has, previous to the excerpt below, proposed that he

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presents the team’s work with the Open Dialogue approach at the school of social and health care workers, where the team is recruiting interns. His argument for doing this is to make the students more aware of what kind of work they would be undertaking when joining the team as interns. He says that he is nervous about presenting their Open Dialogue methods in front of students: »The team leader comments on the psychiatric worker’s nervousness: ›Think about the fact that you have participated in this study group for a year now and came to think about the word ›interviewer‹. That is also an expression of movement [from your approach to things before to your approach to things now, KDS]. I doubt you will be asked questions [at the school, KDS] that you cannot answer.‹« (Study group video)

Then, as the scene continues, there is a shift in the form of the conversation in the study group. »The psychologist comes in and raises attention to the remaining time. There are fifteen minutes left. He suggests a final ›round‹. The round starts with the social worker, then the psychiatric worker who has just expressed his concern and therefore now says: ›I have already spoken‹. After him, the nurse is speaking about what comes up in her mind.« (Study group video)

Importantly for my analysis, neither the social worker nor the nurse addresses the specific nervousness expressed previously by the psychiatric worker. In alignment with the flattening of hierarchy in the Open Dialogue approach, they associate their input to their personal state of mind and to how they have experienced the session. The following segment illustrates how the consultant psychiatrist and the team leader respond to the nervousness of the psychiatric worker. »The consultant psychiatrist comments: ›the more one is familiar with it the less one can keep it out [from ones habits and way of thinking, KDS]. There will be a time where you cannot refrain yourself from talking about it [your experiences with the Open Dialogue approach, KDS].‹ The psychiatric worker responds: ›I know the school has something about us in writing [written information about the services of the team,

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a so-called service declaration, KDS], but that is not the same as being given the opportunity to explain who we are.‹ The team leader comments: ›Well, I felt like taking up the thread, where you talked about going to the school for social and health care workers [where you are to present our work]‹ Then she draws in a reference of a book she read and that she experienced as very difficult to understand. She says: ›When it came out, nobody understood it! I didn’t understand it either. But recently, I read it again at the weekend and this time, I got the feeling I understood its meaning. I felt I didn’t have to look up every second word in the dictionary‹ Eventually, she compares this reading experience with the learning process of introducing the Open Dialogue approach to the team when she explains: ›exactly this process… one can be alienated and then in a certain moment, where one has worked on it for a while a light dawns on you. We are at different stages in the process. I don’t think there is a right or a wrong way to do Open Dialogue‹.« (study group session)

The team leader takes up a specific thread about what has been said during the previous conversation. She chooses to address the nervousness of the psychiatric worker; importantly, she does not participate in the circulations of material and conversational forms that should produce the ideal performance of Open Dialogue, namely the ideal of the absence of judgments and advice that reproduce hierarchical positions. The team leader comments and judges (which is calling upon her capacity and duty as a leader), rather than aligning with the ›rules‹ of the round by associating (which enables the role of collective participation). The team leader takes up what can be called a »manifest absent« thread (Law and Mol 2001) by enrolling her position as a manager. She displaces the form of the round in the way she moves between using the voice as participant member and that of a manager. On the one hand the ›round‹ gives her permission to speak both as a manager and as a learning participant. At the same time, she transgresses the conventions organising the round. This is possible because the rules of the round contain the possibility of ›free association‹ in the sense that it is possible to talk about anything (including managerial input). So there is a paradox in the performance of the ›round‹, because it makes all voices available and also allows managerial and di-

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rectory input. The performance of Open Dialogue treatment becomes more hybrid. On the one hand, the effect of the ›round‹ is that it facilitates the flattening of hierarchies. On the other hand, it also allows stereotypical management strategies of judgement and guidance of employees. This is illustrated by the team manager consoling her employee. She is soothing the psychiatric worker by telling him that being nervous is not an individual problem, but a collective feeling hereby understood to be acceptable. Further, she explains that there is no right and wrong in Open Dialogue explaining to the psychiatric worker that he cannot do anything wrong. How do these comments align with the aim of dissolving expert positions contained in the Open Dialogue approach? They are not in themselves wrong, but in the configuration with ideals of Open Dialogue treatment they are in conflict. First, the manager is taking up her expert position as a manager. Second, she is giving answers in order to soothe the psychiatric worker. Her answers are part of a managerial governing strategy for making her employee comfortable with what he has volunteered to do, namely presenting the team’s work to the students. The analysed sequence shows that creating new practices cannot only be understood as linear courses of events. It is about the creation of fluidity (Law and Singleton 2005) in the sense that the purifying attempt is weakened because boundaries between inside references to Open Dialogue treatment ideals and outside references are blurred (Mol and Law 1994; Elgaard Jensen 2004; Law and Singleton 2005). Thus, the ›round‹ both materializes variability in practice and makes practice possible. This means that Open Dialogue is not always isolated or disconnected from the surroundings (for example managerial responsibilities), but is woven into them. These movements are characterised by the fact that socio-material configurations are not always aligned in the same direction. If that was the case, we could talk about maintenance of a regional ordering with clear borders, where differences within borders are suppressed (Elgaard Jensen 2004: 79) – what I have called purification attempts. To conclude on this point, connecting to the conversational round as both a manager and a collective participant is an illustration of performances where signs of hybridisation are taking

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place. Hybridisation is the dilution of an Open Dialogue treatment as a pure ideal. It is connected to the continuation of management responsibilities and hierarchical traditions, in spite of the fact that these actions are contrary to the dilution of expert positions. These are, however, also made available in the conversational form of the round. The empirical material shows here that the ambition of creating a pure Open Dialogue treatment with no hierarchies and no governmental technologies is very difficult to achieve in practice. Here there are direct ruptures between the ideal of treatment approach of Open Dialogue’s non-hierarchical principle performed through the material configuration in the study group setting and the experiences and (hierarchical) obligations that the team members carry with them into this room. This fragment of conversation and the physical setup show that the ›round‹ in the study group both make available various kinds of participation including patterns of hierarchical leadership. So, to give a preliminary conclusion, this sequence reveals that Open Dialogue treatment is not only referring to one clear entity, but is linking to other times and responsibilities outside of the room.

Third analytical example: On the performance of both the ideal and the traditional way of becoming professional So far, in the analysis of reconstructing how the hierarchical positions are reinserted in the performance of Open Dialogue treatment practices, I have highlighted how socio-material setups are performative. I have shown that socio-material setups can change according to the associations that are taken up by participants. Moreover, I also showed that new patterns of governance must be developed when successfully working with Open Dialogue since who has the ability to define the agenda, who has the ability to participate as a manager, and who has the ability to give advice to fellow colleagues becomes harder to define. This vagueness means that physical setups and conversational forms make possible both the flattening and the reproduction of hierarchies. However, this does not necessarily have to be a contradiction. In the next interview excerpt a team member succeeds in mastering both a purified ideal of Open

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Dialogue, by participating in the ›right way‹ in the study group setting but at the same time acknowledges stereotypical hierarchical positions. This is an analysis of a very subtle, but sophisticated handling of the negotiation of a professional identity in the performance of new practices. On the one hand, we will see an example of how one can participate when aligning with the sociomaterial setup of Open Dialogue. At the same time we will see that stereotypical trails of hierarchical behaviour are present and acknowledged, but then gently renegotiated. The empirical data is again taken from the study group setting, where each member of personnel is invited to associate on what has been said. It is the turn of the consultant psychiatrist: »The consultant psychiatrist says: ›I was sitting thinking whether there is any difference in thinking about something and reflecting about something. I imagine that there is a difference but it is difficult to say what it is‹. The social and health care worker continues: ›Look now it is difficult to take up this thread (addressing the psychiatrist by looking at him. She does not wait for an answer and continues as her comment was established). No, [as if she takes back her just said comment, KDS], what I came to think of is, what limits myself, what is restraining me. There is an expectation about a way to work that can be a hindrance to be in it, to be in the instant. So that is what I am thinking‹.« (study group video).

What happened was that the social and health care worker responded to what the consultant psychiatrist had just said even though this was not expected of her. She did so, not by following the round format that makes it possible to contribute any personal input, but by commenting on what the consultant psychiatrist said – »Look now it is difficult to take up this thread«. The response shows an attempt of negotiating the hierarchical positions in spite of the round’s purifying attempt of performing collectively. The social- and health care worker notices that it is difficult to take up the ›thread‹ of the psychiatrist. By replying to his input she acknowledges his authority and hierarchical position, as if she is obliged to respond directly to his reflection. She is acknowledging hierarchies because she explicitly names and takes into account the associations of the psychia-

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trist.3 In fact, when considering her acknowledgement of hierarchies, it is quite surprising that she continues talking about how difficult it is to comply with the Open Dialogue principle of »working in the instant«. »Working in the instant« implies not referring to diagnostic principles or methods but listening to the immediate needs of the patients (which also forms part of the dissolution of traditional expert roles because it discards the symptom checklists of the diagnostic system). She is thus continuing her participation in the round by not connecting to what the psychiatrist just said. But it is not her courage and willingness to change her role that enables this; it is also the round and the specific, earlier described setup of the study group that engender this response. The round makes it possible both to recognize traditional hierarchical positions and to transgress them. By acknowledging the existence of the psychiatrist’s utterances, it opens up a possibility of renegotiating his position and hierarchical positions in general, because the acknowledgement is also an avoidance of conflict and opposition (disagreement is not exposed). In this way the stabilisation of community and the principle of inclusion are established in the group of staff members. The analysis of this excerpt shows that the ›round‹ makes it possible to circulate traditional expert roles because it blurs the explicit right and duty to set the agenda and govern ways of participating. The round means that members of staff should govern and discipline themselves into new professional identities where »working in the instant« and the dissolution of expert roles are central criteria of appropriateness. But in order to be able to do so, each member of staff is to take up this availability in the round. Making things available does not mean that they necessarily will have an effect. However, in this empirical excerpt, the social and health care worker does seem to be able to change traditional expert roles by acknowledging the performance of hierarchical positions (from the psychiatrist) and by referring to her own personal considerations: »what I came to think of is, what limits myself, what is refraining me.« (study group video). Here is another dimension in the renegotiation of professionalities: Coming with personal considera3

This interpretation is also supported by tone and body language.

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tions means that her alternative response to the hierarchical performance at first does not feed into a collective pattern, but can be considered as personal action and therefore not threatening the apparent stabilised expert position of the psychiatrist. At the same time, the social and health care worker actually succeeds in responding in a way that complies with the ideal of Open Dialogue dissolution of expert roles by referring to what is difficult for her personally.

Conclusion With the three empirical sequences I aimed to show that the dissolution of expert roles, by the means of the introduction of Open Dialogue treatment in adult psychiatry, depends on how people and materialities are entangled. In the first analysis, I showed how the performances of a purified Open Dialogue practice are achieved through a configuration of entities, which are aligned in to perform an ideal. This configuration makes possible the dissolution of expert positions and participation with what could be called collective human presence. This is a practice, which attempts to exclude things and technologies belonging to the psychiatric system. The second analysis is showing a hybridisation process where ideals are mixed with hierarchical stereotypical trails and governmental technologies. This hybridising process has effects on several professional participation possibilities and the ideal of the Open Dialogue approach is destabilised. When the ideal gets blurred and disturbed, as we have seen in the second analysis, materialities also make possible performances that do not necessarily correspond with the ideal dissolution of hierarchy. The performative effects that are crafted in this setup suggest the creation of professional practices that both comply with the ideal and at the same time include practices from outside the study group room, namely management responsibilities. The last analysis again shows an example of hybridisation. It illustrates that renegotiation of practices can be an inclusive process where both purified elements of Open Dialogue and challenging elements can co-exist. It seems that the purified ideal of Open Dialogue and stereotypical hierarchical trails are

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combining in a non-conflictual manner. It also shows that creating an ›alternative‹ practice is not only a matter of establishing an idealized version of care that is excluded from the existing practices. Rather, this analysis shows that an alternative practice is a non-conflictual mixture that does succeed in challenging the hierarchies involved in the execution of care. The analyses indicate that an argument of prevention in some practices can take its point of departure in the renegotiating professional identities rather than in how patients are to behave differently. But it also sees prevention as a heterogenic configuration. On the one hand the socio-material setup makes collective participation possible. This means that professionals are exploring preventive care treatment solutions in ways they would ideally do in the network meetings where patients and their relatives are participating as well. On the other hand, it makes it possible to construct a story about oneself, which facilitates the staff members’ development as self-managing professionals. This is in line with modern management strategies, where governing strategies are made invisible, and where management strategies are converted to individual existential projects. A central argument is that the individual project of the introduction of a new treatment approach melts together with psychiatric treatment. To develop appropriate professional practice using a mixture of Open Dialogue ideals and existing psychiatric practices thus involves the ability to navigate between principles of a medical world view (expert positions, diagnostic principles etc.) and the principles of care understood as working without presumptions where it is necessary to encounter individual existential ethical considerations. In sum, the three analyses show that these material-rhetoric alignments choreograph multiple performances. Thus, in general terms the analyses of the chapter suggest that preventive programmes are shaped by the situated effects of their socio-material setups. This in turn influences how professionals can connect and practice prevention but also influence the stability of what is to be understood as prevention. In overall terms this study shows how difficult it is to renegotiate and conduct what might be regarded as good preventive care. In fact, many academics in medical sociology and medical anthropology have criticised health promotion and

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prevention programmes for containing objectifying and patronising tendencies. Open Dialogue is obviously reflecting this critique by arguing for, what can be described as, a radically different professional-patient relationship that destabilises layexpert dichotomies and seeks to empower patients. Despite this aspiration however, an analysis that lies, following Latour (1991/1993), beneath modernism and postmodernism, may nuance this aspiration, since it highlights that hierarchies and professionals are not the result of a social construction, but the result of the configuration of very concrete, material settings and social relations. The overall argument of this chapter is to highlight that actor-network and STS approaches, with their reluctance to solely focus on social matters which explicitly take materialities and the non-human into account, may thus help to develop treatment approaches that come closer to what is being done (and possibly: what should be done) in prevention practice.

References Dean, Mitchell (1999). Governmentality: Power and rule in modern society. London, Sage. Elgaard Jensen, Torben (2004). »Hvad er en fri agent? – identificeringsprocesser i tid og rum« Nordiske Organisasjonsstudier 6(2): 75-94. Elgaard Jensen, Torben (2008). »Future and Furniture: A study of a New Economy Firm's Powers of Persuasion« Science, Technology & Human Values 33(1). Elgaard Jensen, Torben (2001). Performing Social Work: Competence, orderings, spaces and objects. Psykologi. København, Københavns Universitet: 217. Foucault, Michel (1979/1973). Discipline & Punish. Harmondsworth, Penguin. Gergen, Kenneth (1985). »The social constructionist movement in modern psychology« American Psychologist 40: 266-275. Gherardi, Silvia and Davide Nicolini (2002). »Learning in a constellation of interconnected practices: Canon or dissonance?« Journal of Management Studies 39(4): 419-436.

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Illich, Ivan (1976). Medical nemesis: the expropriation of health. New York, Pantheon. Juelskjær, Malou (2007). Rummenes modstande – Subjektivering i et spatielt perspektiv. Magtballader. Jette Kofoed and Dorthe Staunæs. København, Danmarks Pædagogiske Universitetsforlag. Latour, Bruno (1993/1991). We have never been modern. Cambridge, Mass., Harvard University Press. Law, John (1992). »Notes on the Theory of the Actor-Network: Ordering, Strategy and Heterogeneity.« Systems Practice 5: 379-393. Law, John and Annemarie Mol (2001). »Situating technoscience: an inquiry into spatialities« Environment and Planning D: Society & Space 19(5): 609-621. Law, John and Ingunn Moser (1999/2003). »Managing, subjectivities and desires« Concepts and Transformation 4 (3): 249279. Law, John and Vicky Singleton (2005). »Object Lessons« Organization 12(3): 331-355. Mol, Annemarie (2002). The body multiple. Durham, Duke University Press. Mol, Annemarie (2008). The Logic of Care: Health and the Problem of Patient Choice. Abingdon, New York, Routledge. Mol, Annemarie and John Law (1994). »Regions, Networks and Fluids: Anaemia and Social Topology« Social Studies of Science 24: 641-671. Orlikowski, Wanda (2002). »Knowing in Practice – Enacting a collective capability in distributed organizing« Organization Science 13(3): 249-273. Orlikowski, Wanda (2006). »Material Knowing: The scaffolding of human knowledgeability« European Journal of Information Systems 15: 460-466. Rose, Nikolas (1998). Inventing our selves: psychology, power, and personhood, Cambridge University Press. Scheper-Hughes, Nancy and Margaret Lock (1987). »The mindful body« Medical Anthropology Quarterly 1(1): 6-41. Seikkula, Jaakko (2000/2002). Åpne samtaler. Helsingfors, Tano Ashehoug.

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Seikkula, Jaakko and et al. (1995). Treating psychosis by means of open dialogue. The reflective process in action. S. Fredman. New York, Guilford Publication. Seikkula, Jaakko, Birgitta Alakare and Jukka Aaltonen (2000). »A two year follow-up on open dialogue treatment in first episode psychosis: Need for hospitalization and neuroleptic medication decreases.« Social and Clinical Psychiatry 10(2): 20-29. Seikkula, Jaakko, Birgitta Alakare und Jukka Aaltonen (2001). »Open Dialogue in psychosis I: An introduction and case illustration« Journal of Cosntructivist Psychology 14: 247-265. Seikkula, Jaakko and Mary E. Olson (2003). »The Open Dialogue Approach to Acute Psychosis: Its Poetics and Micropolitics« Family Process 42(3): 403-418. Selvini Palazzoli, M., L. Boscolo, G. Cecchin and G. Prata (1980). »Hypotesizing – circularity – neutrality: Three guidelines for the conductor of the session« Family Process 19: 3-12. Sidorov, Pavel and Jakkoo Seikkula (2003). Open Dialogue in the psychiatric practice of Barentsregion, Archangel Publishing Centre: Northern State Medical University Archangelsk, Изд. центр Сев. гос. мед. ун-та. Sørensen, Estrid (2005). STS goes to school: spatial imaginaries of technology, knowledge and presence. København, Københavns Universitet, Institut for Psykologi, Det Samfundsvidenskabelige Fakultet, Ph.d.-afhandling.

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Preferences ve rs us Ca pabilities : How to Improve the (Future) Qualit y of Life for Women w ith Abled and Disa ble d Childre n MARLI HUIJER

Prevention and health promotion programmes aim to protect our future health. To reduce the risk of cancer, Alzheimer’s, or cardiovascular diseases, governments and health organisations have developed extensive screening and preventive treatment programmes. In addition, a whole range of lifestyle recommendations is mediated to the public in general. In order to enhance patients’ cooperation in prevention and health promotion programs, the advice is tailored as much as possible to individual patients. Contemporary prevention programmes take not only people’s health into account, but also their quality of life. The protection of an individual’s future health is balanced against the impact this protection has on his or her current quality of life. To better understand what people value as quality of life, sophisticated preference assessments have been developed which enable people to indicate which choices they prefer above others. A relatively new development in the ever more complex decision-making procedures concerning prevention and health

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promotion is the consideration of the preferences that persons have with regard to a future quality of life, both of themselves and their prospective children. In prenatal testing, for example, women might be asked what decision they would make if there was a 50% chance of having a baby with Down syndrome, either continuing the pregnancy or terminating it1. The assumption underlying these future-oriented preference assessments is that people can give representative accounts of the future in the present. Asking women2 to express preferences about prenatal testing presupposes that they know about the future each option will bring. If they are well informed, women are expected to be able to understand and foresee the future health outcomes and future quality of life behind their decisions. They are assumed to be able to choose and generate a future by expressing their preferences and acting accordingly. In this chapter, I study the temporal presuppositions underlying prenatal genetic and chromosomal testing. What relationships do health professionals, epidemiologists, social theorists, political authorities and prospective parents construct between past, present and future? To what conception of the future do the various actors involved give their allegiance? What reasons do health professionals have to take into account women’s preferences regarding their future quality of life? I postulate that it is difficult, if not impossible, for individual women to know what impact the care of a child with or without congenital defects can have on their future quality of life. The more philosophical issue is how to view women’s quality of life with a child in a temporal perspective. In line with Martha Nussbaum’s version of the capabilities approach, I argue that women’s future quality of life is better served by prevention and health promotion programmes that guarantee fair equality of opportunity to all newborns, whatever their abilities and needs, than by programmes that fulfill women’s present-day preferences for potential but as yet unknown futures.

1 2

The example is given in Bekker, Hewison, & Thornton, 2004. Although prenatal testing not only involves women but their partners as well, the preferences of future fathers have barely been studied (Harris et al., 2001, p. 30). This is why I mainly speak of women’s preferences in the rest of this article.

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Time Underlying the discourse on preferences regarding prenatal testing is how we deal with time. Contemporary social science studies note that time is a social construct rather than a universal given (Elias 1984; Adam 1990; Nowotny 2005). Conceptions of time are constructed and used in concrete social practices. In preventive medicine, time is predominantly conceptualized and understood as linear: the world and human beings are placed on a line with a beginning, a middle and an end. The arrow of time points forward from the past via the present to the future. In this linear perspective, it is common to look for causal relationships between earlier and later events and determine the future based on the findings. The treatment of hypertension, for example, is based on this type of causal, linear thinking. Epidemiological studies comparing the frequency of cardiovascular disease in individuals with and without hypertension show that hypertension is a causal determinant (risk factor) for myocardial infarct. Although based on past evidence, physicians assume hypertension is a risk factor today as well and will remain one in the future. Hypertension management is thus recommended for everyone with severe hypertension. The reason for care is primarily medical: untreated, hypertension will cause cardiovascular disease in the future. In temporal terms, a health-related concern with the future is introduced: everyone with hypertension is expected to take responsibility for his or her future health, even if there are no symptoms today. Evidence-based guidelines on hypertension treatment also address patients’ quality of life: patient preferences are widely studied. However, these preferences are not related to the patients’ future but to their current quality of life. Preference assessments weigh the pros of preventing future cardiovascular disease against the cons of the effects of treatment on the current quality of life (Little, Barnett et al. 2002; Morecroft, Cantrill et al. 2006). What about prenatal testing? Here predictions about the future are also based on prior medical findings. The prediction that a woman will give birth to a child with Down syndrome if her fetus’ DNA shows three chromosomes 21 instead of two is based on earlier studies of heredity. Prenatal testing creates

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causal links between the past, present and future and perceives time as linear. In this sense, the temporal perspective of prenatal testing is similar to that of hypertension management. However, the temporal perspectives of hypertension treatment and prenatal testing differ where preferences are concerned. Although some studies on prenatal testing focus on women’s preferences in the present (the preferred timing of the testing, for example: having it in the first rather than the second trimester of pregnancy), most preference assessments ask pregnant women to voice their preferences for a future life. In the case of hypertension, patients are not asked if they prefer a future with or without cardiovascular disease. It is taken for granted that they prefer a future without. Preference assessments related to hypertension are aimed at the current quality of life, i.e. the preferences people have towards their present-day hypertension management. The question of what future patients prefer is not under discussion. In the case of prenatal testing, conversely, the prime aim of preference assessment studies is to investigate women’s preferences for the future.

Including women’s preferences In prenatal testing discourses, there are at least three reasons why professionals find it important to consider women’s preferences regarding their future quality of life (Harris, Washington et al. 2001; de Graaf, Tijmstra et al. 2002; Garel, Gosme-Seguret et al. 2002; Grobman, Dooley et al. 2002; Vergani, Locatelli et al. 2002; Mulvey, Zachariah et al. 2003; Kuppermann, Nease Jr. et al. 2004; Spencer and Aitken 2004; Chan, Chau et al. 2005). The first is that the therapeutic capacity to treat chromosomal disorders is limited. Prenatal diagnosis raises widespread ethical concerns, since both choices that prospective parents have, i.e. continuing or terminating of the pregnancy, have far-reaching consequences, both at the individual and the social level. It is clear that women need to have a say. The second reason has to do with uncertainty: the prognosis of chromosomal and genetic abnormalities is often unpredictable and ambiguous (van Zwieten, Willems et al. 2005). The linear and causal relations between the past, present and future

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may be clear at the chromosomal and genetic level (trisomy 21 means the birth of a Down syndrome child), but it is not the case at the phenotypic level. It is hard to predict how today’s genotypic findings will be phenotypically expressed in tomorrow’s organism. No one can foresee whether the Down syndrome child will be severely handicapped or will be able to function relatively normally and contribute in his or her own way to society. The less capable professionals are of predicting the future life of the child in question, the more important women’s preferences for the future are in the decision-making process. A third reason professionals like to share the responsibility for the future with the mother is that the quality of life of children with congenital diseases, disabilities and impairments largely depends on external factors like the parents’ income, the conditions in the country where the child grows up, the number and quality of care facilities, the society’s acceptance of people with disabilities and their opportunities to be and do whatever they choose. Clinical geneticists are unable to predict the individual or collective future quality of life of people with disabilities and impairments. Disabled people might be treated as equals in the future, as Nussbaum (2006) recommends. But they might also be even more dependent on charity and unpaid care than today. However, although the prognosis of genetic and chromosomal abnormalities is often uncertain and it is hard to predict the individual and social prognosis of living with a child with or without disabilities or impairments, prenatal testing preference assessments assume that women are able to express their preferences regarding their future lives. Not knowing the future or not being concerned about the future is neither accepted nor valued. By assessing women’s preferences for an expected future, professionals, patients and politicians try to get a grip on the unknown future. In these preference assessments, however, time is not viewed as an arrow running from the past through the present to the future. The past and the future are more and more conceptualised as parts of the present – a process in which the present becomes ›extended‹, as Nowotny calls it (2005). There is no before and after, but just a here and now, in which ›futures‹ and ›pasts‹ are possible directions to be taken in the

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present. Which ›future‹ comes to pass is felt to depend on what women prefer and choose in the present. Patient involvement in shaping particular futures is not specific to prenatal testing. In his study on how patients’ associations invest hope in the possibilities of biomedical research to develop cures, Novas found a similar active involvement in shaping and securing particular futures to the exclusion of others (Novas 2006). If we try and visualise the time conceptualisation of these ›future‹-oriented medical discourses, spatial metaphors might be more adequate than temporal ones. A good quality of life is primarily a matter of taking the right direction, choosing the right door. Metaphorically, the notion of time-as-present is like a city map simultaneously showing past, present and future occurrences. By surveying the streets, doors, signs, residents, vehicles and so on, one learns about the city’s past, present and future. Time as a city map gives us the illusion we can know the future, i.e. what our chosen direction will lead to.

Time trade-off approach An example of how time-as-present is constructed in a prenatal testing preference assessment is the time trade-off approach, a procedure that asks pregnant women how much lifetime they are willing to give up to avoid a less than ideal future. As Harris, Washington, Nease Jr, & Kuppermann write: »The assessment procedure involves asking each woman to choose between living her full life expectancy with a less desirable outcome (e.g. a child with Down syndrome) and living a shorter time with an ideal outcome (i.e. perfect knowledge of an unaffected foetus without invasive testing followed by the birth of a healthy child)«. (Harris, Washington et al. 2004: 279)

Preference scores usually vary from 0 to 1. Zero stands for the worst imaginable outcome (death) and 1 for the best (perfect health for mother and child). Suppose a 35-year-old woman is prepared to die at 65 instead of 75 to reach an ideal outcome. Her preference for a child with Down syndrome is 30:40, i.e.

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0.75. This preference goes down to 0.5 (20:40) if she is prepared to lower her life expectancy to 55. The assessment procedure suggests that taking care of a child with Down syndrome costs the woman one or two decades of her lifetime. Her preference to avoid having a baby with Down syndrome is measured by her current willingness to give up the same number of life years. In this time trade-off approach, women are assumed to comprehend in the present the difference between a potential future with a healthy child or one with a Down syndrome child. It is doubtful that this assumption is accurate. Even if it were possible to sketch a clear picture of a child with Down syndrome, women can hardly know at this point in time what their life would be like with a Down syndrome child or a healthy child. It is hard to envisage how the women and the people around them would respond to the birth or abortion of a Down syndrome child, let alone how they and their significant others and society would deal with a ›less ideal‹ child in the long run or an abortion on chromosomal or genetic grounds. For the sake of argument, let’s assume it is indeed possible to give women adequate and complete information on what their lives with a child with Down syndrome would be like3. They would be expected to clearly see the difference between their own future life years with a healthy child or with a Down syndrome child. The assumption that people are capable of doing so is doubtful in itself. There is not just one way to determine the (expected) duration of time. If time is conceptualized as mathematical and abstract, i.e. as equably flowing calendar time, 30 years is, and is expected to be, 75% of 40 years. If, however, time is conceptualised as the durations that we experience subjectively, time does not pass in equal units: one year passes quickly, another lasts forever. Our expectations of the lengths of future years change accordingly. As psychology research shows, the perception of duration changes in the

3

In the study by Kuppermann et al. (Kuppermann, Nease Jr. et al. 2004: 425), three pictures of individuals with Down syndrome in various settings were shown to each pregnant woman while an interviewer read her a balanced medical and psychosocial description of the syndrome.

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course of life. Life speeds up as one gets older (Draaisma 2004). The years ahead of us are not necessarily as long as the ones behind us. By focusing on mathematical time, the time trade-off approach disregards the lifetime shifts in people’s experience of duration. Preference scores do not inform us about the past or future as such. They do say something about the present, i.e. to what extent women now prefer a potential future with a healthy or a Down syndrome child. Moreover, preference scores reveal something about how women in the first decade of the twentyfirst century evaluate the quality of life of Down syndrome children and their mothers. Preference assessments in prenatal testing conceptualise time as no more than the present. They do not provide any knowledge of women’s quality of life in 2020 or 2050. Nor do they say anything about the quality of life of women with healthy or Down syndrome children in 1960 or 1990. Quality of life is seen in the sense of momentary satisfaction, i.e. women are now content that their decisions are in keeping with their current preference for a particular potential future. This perspective lacks the awareness that it is hard to predict the quality of life with a ›normal‹ or a disabled child. Nor is there an awareness that life consists of distinct temporal phases in which quality of life has different meanings. Momentary satisfaction is important, but in the long run it is not the only thing that counts.

Ad a p t i ve p r e f e r e n c e s The statement that women are the best judges of their own health-related quality of life and that preference assessments are thus the best way to determine their health-related quality of life might be true if quality of life referred to women’s present situation. But it is problematic if preference assessments overlook the fact that they encompass a time that does not yet exist and is not yet known. Two important issues are not taken into consideration. Firstly, preferences alter during a lifetime. We may prefer rock music today and jazz tomorrow. Preferences adapt to shifts in what a person learns, experiences, feels and values as

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well as shifts in what the social and familial contexts know, value, prefer and allow4. Miscarriages, bouts of infertility, advancing maternal age, having helped raise a brother with Down syndrome, growing confidence in medicine, a better understanding of scientific discourse or growing disbelief in scientific discourse, changes in religious beliefs, political opinions or moral values, a practical sense of the epidemiology of one’s community, a sense of guilt, the offer of family support, a husband reluctant to submit to testing are only some of the factors that can cause ›a change of heart‹ (Rapp 2000). Furthermore, what people prefer is largely structured by what Nussbaum calls their capabilities, i.e. what they are actually able to be and do (Nussbaum 2000: 79f.; McRae 2003). The extent to which women are able to take care of disabled children depends in part on how their society deals with these children. Nowadays, having a child with Down syndrome or any other disorder has enormous consequences for women. As Nussbaum argues in her study of social justice for people with disabilities and impairments: »The realities of life in nations that still assume (as to some extent all modern nations do) that this work (taking care of children with severe impairments, MH) will be done for free, ›out of love‹, still put enormous burdens on women across the entire economic spectrum, diminishing their productivity and their contribution to civic and political life.« (Nussbaum 2006: 102)

People generally adjust their preferences to what they are able to be and do and what society expects them to achieve. Unfair conditions like sex discrimination or discrimination against disabled people affect these preferences. If people with Down syndrome or other disabilities were to be treated as full citizens and their extra needs were included in the general social arrangements, women would probably have different preferences than in the case of when disabled people are considered less important and women are seen as their primary caregivers. 4

As regards the adaptiveness of preferences related to prenatal testing, see Wortelboer, de Wolf et al. 2000; Learman, Kuppermann et al. 2003; Koshbood, Blondel et al. 2005; van den Berg, Timmermans et al. 2005.

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Secondly, preferences are not expressed in a vacuum. Whether a predicted and preferred outcome, i.e. a good quality of life, becomes a reality depends on the individual and social context in which the preference can develop into a particular quality of life. However, the context in which preferences are expressed is not the same as the one in which the predicted outcome becomes a reality. Individual and social values and quality judgments change significantly in a lifetime and over time. Prospects for people with a disease or disability can also change drastically as a result of new treatments or better care. What a woman in her twenties in the 1970s thought was acceptable might be unacceptable to her in her fifties in 2009. What a society considers acceptable today might be socially unacceptable in 2020. What an individual and a society view as quality of life might change accordingly. All in all, preference scores related to having a healthy or a less ideal child say more about the extent to which women are capable today of having a good quality of life with a less ideal child, than about the quality of life women with healthy or disabled children will have in 2012 or 2025. And these scores do not say much about what the women’s preferences will be then.

A capabilities-based approach By constructing time as a present that includes the past as well as the future, preference-based prenatal testing programmes promote a non-linear, non-sequential conception of personhood in which quality of life stands for momentary satisfaction with the direction chosen. Whether the expected future life behind the selected option is really what women thought it would be is not known. Due to calendar time limitations, preference studies cannot show the extent to which women’s preferences when they are pregnant correspond to what they value as quality of life one, five and ten years later. What is not taken into account is that life has distinct temporal stages in which the same person may have widely varying needs and preferences and in which quality of life may have different meanings. In this respect, the capabilities approach, a quality of life assessment developed in the field of economics by Amartya Sen

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and elaborated upon in conjunction with Martha Nussbaum and others, offers a more promising perspective. The capabilities approach has only recently entered the fields of health care and medicine (Anand 2005). In the capabilities approach, quality of life is not primarily connected to people’s preferences or income, but to what they are capable of. Attention is devoted to what people can do (capabilities), and not to what they do (functioning) or prefer (preferences). Nussbaum’s version of the approach is slightly different from Sen’s, in part because it is more philosophically underpinned. Her capabilities approach is grounded in a political conception of the person holding that »human beings are vulnerable temporal creatures, both capable and needy, disabled in many different ways and in need of a rich plurality of lifeactivities« (Nussbaum 2006, 221). It starts from a variegated and temporally complex conception of the person, acknowledging that people vary greatly in their needs for resources and care, and that a person’s needs may change considerably at different stages of life (Nussbaum 2006: 87f.). Unlike Sen, Nussbaum also takes a stand on what the central capabilities are. She presents a list of ten central human capabilities essential to a full human life such as being able to live to the end of a human life of normal length, to have good health, to have emotions and practical reason, to play and to have control over one’s environment. Nussbaum argues that everyone, adults and children with disabilities and impairments included, should have a basic level of each of the ten capabilities (Nussbaum 2000: 70; Nussbaum 2001: 418). The conceptualisation of time in Nussbaum’s capabilities approach differs significantly from the preference-based approach in prenatal testing. Firstly, the capabilities approach values the past, present and future as such. Time is not constructed as a present that includes the past and future. Nor is time constructed as a pure causal linearity. Nussbaum presents a sequential view of time in which societies and individuals as well as our ethical and political theorising proceed via a reflective dialogue with past and present intuitions and beliefs. The capabilities approach emphasises that life has distinct temporal phases in which what people perceive as quality of life varies. At each stage, we have to be responsive to past and contempo-

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rary practices and theories and try to learn from them. In relation to the present, it asks what we are capable of today, not what we prefer for the future. As regards the future, the capabilities approach aims to keep the opportunities as open as possible by promoting in the present a plurality of ends, all qualitatively distinct. In her writings, Nussbaum repeatedly values openness to luck and thus to the opportunities an unknown future offers as an enriching aspect of human life (Nussbaum 1986). If we apply the capabilities approach and its temporally complex conception of the person to prenatal testing policies at the health policy level, the more relevant political and moral question is how to guarantee to women, prospective parents and disabled children a rich plurality of activities and opportunities now, tomorrow and in the long run. Building policies on the sum of what individual women prefer nowadays demonstrates a lack of political vision regarding what human life is, what capabilities we want to ensure to prospective parents and their children, and how we can bring every adult and child up to the level of these capabilities. Women’s quality of life with children is better served by policies that aim to improve the capabilities of caregivers and children, whether healthy or disabled, than by policies that aim to momentarily satisfy the current preferences of women. In order to proceed with our ethical and political theorising on prenatal testing, is it important to be responsive to the past and present experiences of women/parents with prenatal testing and learn from them. Long-term ethnographic research that can also take into account the adaptiveness of preferences is more adequate in this connection than assessments of momentary preferences. The more we take care of children with a wide range of abilities and needs, the more opportunity prospective parents will actually have to decide between various ways to live well with children. It is important for prospective parents to know that whatever they decide, society will not be indifferent and will take care of every child. If we apply the capabilities approach at the clinical practice level, prenatal testing policies should be designed to give prospective parents an opportunity to proceed via a reflective dialogue with past and present intuitions and beliefs, for example

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by enabling them to listen to the experiences and stories of men and women who chose to have or not have prenatal testing, who did or did not have an abortion, who had a Down syndrome or a disabled child, who did or did not become pregnant again after an abortion and so forth. Introducing pregnant women to women or couples who have been through this process, whether recently or long ago, is one way to do this. Stories can be videotaped and discussed at a session attended by prospective parents. It is important that the stories show the various options open to prospective parents, the adaptiveness of individual and social preferences, the uncertainty of the future and how they can deal with unwanted or unexpected outcomes. In this approach, preference assessments related to current quality of life or quality of treatment continue to be relevant: What help do parents who decide to terminate a pregnancy prefer? What help do parents who decide not to terminate a pregnancy after a positive diagnosis for Down syndrome prefer? Do women who decide to have prenatal testing prefer a first or a second trimester test?

Conclusion Preference assessments in prenatal testing are modeled according to other preference assessments in prevention and health promotion programmes in which time is primarily viewed as linear. In the preventive medicine model, the past, present and future are assumed to be causally related. By working according to this model, prenatal testing programmes suggest that we know what the future quality of life will be of women with a healthy or a genetically or chromosomally affected child. This suggestion is not accurate. The prognosis for chromosomal and genetic abnormalities is hard to phenotypically or socially foresee. However, instead of acknowledging that the future is more open and less known than we might like and the causal link between the past, present and future is rather weak, professionals emphasise the importance of sharing the responsibility for the future with the women involved. By asking women to express a preference for a particular future, they attempt to get a grip on the unknown future, or at least be sure

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women are content with the procedures. In the process, the conception of time shifts from a causal and linear temporality to a temporality of a present that includes the past as well as the future. Both perspectives fail to recognise that due to the uncertain prognosis of prenatal testing outcomes and the adaptiveness of preferences to changing circumstances, no one can foresee what the quality of life with a disabled child will be within one, five or ten years. Women’s future quality of life with children is better served by health promotion programmes that start from a conceptualization of time as a plurality of temporal trajectories in which past, present and future events and beliefs are distinctively valued. The past, present and future succeed each other without necessarily being linked. Preferences may change at the various stages of life: we learn as we live, circumstances may change and we continually revise and rethink our views. Nussbaum’s version of the capabilities approach fits this conceptualisation of time. Instead of focusing on women’s preferences for a potential future, it concentrates on the opportunities parents now have to take care of various kinds of children and how to improve these opportunities. Rather than upholding the illusion of the known future, the capabilities approach endorses an open and responsive attitude to unknown opportunities in the future.

References Adam, Barbara (1990). Time & Social Theory. Oxford, Polity Press. Anand, Paul (2005). »Capabilities and health« Journal of Medical Ethics 31: 299-303. Chan, Lin W., Mo Ching M. Chau, Tak Y. Leung, Tse N. Leung and Tze K. Lau (2005). »Expectation and knowledge for women undergoing first-trimester screening for Down syndrome in a Chinese population« Prenatal Diagnosis 25: 1248-1252. de Graaf, Irene M. , Tjeerd Tijmstra, Bleker Otto P. and Jan M.M. Van Lith (2002). »Women’s preference in Down syndrome screening« Prenatal Diagnosis 22: 624-629.

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Draaisma, Douwe (2004). Why Life Speeds Up As You Get Older. How Memory Shapes Our Past. Cambridge UK, Cambridge University Press. Elias, Norbert (1984). Über die Zeit. Frankfurt am Main, Suhrkamp Verlag. Garel, Micheline, Sylvie Gosme-Seguret, Monique Kaminski and Marina Cuttini (2002). »Ethical decision-making in prenatal diagnosis and termination of pregnancy: a qualitative survey among physicians and midwives« Prenatal Diagnosis 22: 811-817. Grobman, William A., Sharon L. Dooley, Emely E. Welshman and Eugene Pergament (2002). »Preference assessment of prenatal diagnosis for Down syndrome: Is 35 years a rational cutoff?« Prenatal Diagnosis 22: 1195-1200. Harris, R.A., A.E. Washington, R. F. Nease Jr and M. Kupperman (2004). »Cost Utility of Prenatal diagnosis and the risk-based threshold« The Lancet 363: 276-282 (p. 279). Harris, Ryan A., Eugene A. Washington, David Feeny and Miriam Kuppermann (2001). »Decision analysis of prenatal testing for chromosomal disorders. What do the preferences of pregnant women tell us?« Genetic Testing 5: 23-32. Koshbood, Babak, Béatrice Blondel, Gèrard Bréart, Kwang-Sun Lee, Peter Pryde and Kenneth Schoendorf (2005). »Comparison of the use of amniocentesis in two countries with different policies for prenatal testing: the case of France and the United States« Prenatal Diagnosis 25: 14-19. Kuppermann, Miriam, Robert F. Nease Jr., Elene Gates, Lee Learman, Bruce Blumberg, Virginia Gildengorin and Eugene A. Washington (2004). »How do women of diverse backgrounds value prenatal testing outcomes?« Prenatal Diagnosis 24: 424-429. Learman, Lee, Miriam Kuppermann, Elene Gates, Robert F. Nease Jr., Virginia Gildengorin and Eugene A. Washington (2003). »Social and familial context of prenatal genetic testing decisions: Are there racial/ethic differences?« American Journal of Medical Genetics Part C 119C: 19-26. Little, Paul, Jane Barnett, Lucy Barnsley, Jean Marjoram, Aley Fitzgerald-Barron and David Mant (2002). »Comparison of acceptability of and preferences for different methods of

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measuring blood pressure in primary care« British Medical Journal 325: 258-259. McRae, Susan (2003). »Constraints and choices in mothers’ employment careers. A consideration of Hakim’s preference theory« British Journal of Sociology 54: 317-338. Morecroft, Charles, Judy Cantrill and Mary P. Tully (2006). »Individual patient's preferences for hypertension management: A Q-methodological approach« Patient Education and Counselling 61: 354-362. Mulvey, Sheila, Rebecca Zachariah, Kate McIlwaine and Euan Wallace (2003). »Do women prefer to have screening tests for Down syndrome that have the lowest screen-positive rate or the highest detection rate?« Prenatal Diagnosis 23: 828-832. Novas, Carlos (2006). »The Political Economy of Hope: Patients’ Organizations, Science and Biovalue« BioSocieties 1: 289-305. Nowotny, Helga (2005). Time. The Modern and Postmodern Experience. Cambridge, UK, Polity Press. Nussbaum, Martha C. (1986). The Fragility of Goodness. Luck and ethics in Greek tragedy and philosophy. New York, Cambridge University Press. Nussbaum, Martha C. (2000). Women and Human Development. The Capabilities Approach. Cambridge UK, Cambridge University Press. Nussbaum, Martha C. (2001). Upheavals of thought. The intelligence of emotions. Cambridge UK, Cambridge University Press. Nussbaum, Martha C. (2006). Frontiers of Justice. Disability, nationality, species membership. Cambridge, MA, Harvard University Press. Rapp, Rayna (2000). Testing the Woman, Testing the Fetus. The Social Impact of Amniocentesis in America. New York, Routledge. Spencer, Kevin and David Aitken (2004). »Factors affecting women’s preference for type of prenatal screening test for chromosomal anomalies« Ultrasound Obstetrics Gynecology 24: 735-739. van den Berg, Matthijs, Danielle R. M. Timmermans, Johanna H. Kleinveld, Elisa Garcia, John M.G. van Vugt and Gerrit van der Wal (2005). »Accepting or declining the offer of

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prenatal screening for congenital defects: test uptake and women’s reasons« Prenatal Diagnosis 25: 84-90. van Zwieten, Mayra, Dick L. Willems, Liesbeth L. Litjens, Heleen G. Schuring-Blom and Nico J. Leschot (2005). »How unexpected are unexpected findings in prenatal cytogenetic diagnosis? A literature review« European Journal of Obstetrics and Reproductive Biology 120: 15-21. Vergani, Patrizia, Anna Locatelli, Anna Biffi, Elena Ciriello, Anna Zagarella, John C. Pezzullo and Alesandro Ghidini (2002). »Factors affecting the decision regarding amniocentesis in women at genetic risk because of age 35 years or older« Prenatal Diagnosis 22: 769-774. Wortelboer, M.J.M., B.T.H.M. de Wolf, C.C. VerschuurenBelemans, J. Reefhuis, A. Mantingh, J.R. Beekhuis and M.C. Cornel (2000). »Trends in live birth prevalence of Down Syndrome in the Northern Netherlands 1987-96: the impact of screening and prenatal diagnosis« Prenatal Diagnosis 20: 709-713.

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The Ta ming of Chance and the Ac tual Practice of Pre ve ntion; Rationa lise d Prevention and ›the Social‹ YVONNE J.F.M. JANSEN

The practice of prevention has increasingly become rationalised over the years (Porter 1995; Hunter 2003). As in prevention programmes in general, science and statistics have become part and parcel of the prevention of cardiovascular diseases (CVD). The prevention of cardiovascular diseases is becoming rationalised. And for some time now, the notion of health risk has been a central concept. One reasons for this is, firstly, a changing perception of nature, body and disease from the nineteenth century onwards. As Hacking (1990) has shown, since a new manner of scientific reasoning based upon statistics came into being in the nineteenth century, prevention and health promotion programmes have become about the ›taming of chance‹. Aided by statistics and the explanatory power of statistical patterns, the idea grew that nature could be mastered and controlled by science (Porter 1995). With this shift in scientific reasoning, nature was no longer perceived to be deterministic in character, but became perceived as predictable and controllable. In other words, scientific and statistical information about diseases and conditions was – and still is – perceived to generate the possibility to control diseases and even eradicate them (Armstrong 1995).

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A second reason for the rationalisation of the prevention of cardiovascular diseases is the rise of ›risk factor epidemiology‹. Aronowitz (1998) showed, that with the Framingham Heart Study in the 1950’s ›health risk‹ emerged as a concept, that quickly invaded mainstream medical thinking of and practice on cardiovascular diseases. The notion of health risk has become important, as it provides the information about the chance of hazard – or risk – to health caused by cardiovascular diseases in individuals in terms of probabilities (Carter 1995). In fact, the notion of health risk renders cardiovascular diseases to be known or knowable and thus preventable (cf. Bunton, Nettleton et al. 1995b), as it portrays the probability of cardiovascular events in people in future. Whereas in the pre-risk factor era cardiovascular diseases were considered »not preventable at the present time«, contemporary approaches stress that cardiovascular diseases are preventable by identifying and intervening in the modifiable risk factors such as smoking, high blood pressure and high cholesterol (Aronowitz 1998). The rationalisation and enumeration of prevention allow for the grasping of people’s health and their risk for CVD in quantifiable terms (Carter 1995; Gabe 1995a; Gabe 1995b). Risk profile assessments produce numerical outcomes of an individual’s health status that are considered objective, neutral, and removed from all subjective interpretation. Because of a growing ›trust in numbers‹ (Porter 1995) in prevention, scientifically gathered numerical outcomes have become associated with objectivity, neutrality and legitimisation of treatment. In other words, as risk profile assessments measure and objectify the health status of individuals, they enable the classification of individuals as ›deviant‹ in respect to their health status and legitimise medical intervention or treatment to be undertaken (Howson 1998). For example, individuals with a blood pressure above the norm tension of 140/90 mmHg measured over a longer period of time are considered ›hypertensive‹ and at risk for cardiovascular diseases. These numbers indicate hypertension and legitimise treatment with blood pressure-lowering medication. The rationalisation and enumeration of prevention thus allow to diagnose the health of individuals, that are ›at risk‹ for CVD and perceived to be ›deviant‹ in respect to their health status compared to other individuals (Hacking 1990).

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With the best of intentions, a rationalistic approach does hold a deterministic notion towards health. The rationalistic approach in prevention is based upon the idea that nature can be mastered and controlled by science (Porter 1995). It is based upon the idea that nature’s hazards can be countered rationally (Carter 1995; Gabe 1995a; Gabe 1995b) and diseases can be fought with technoscience. It assumes that once the scientific and numerical information on health risks is known, diseases can be intervened upon scientifically and restored by medicine (Scott and Freeman 1995). Such a view underscores a belief in a kind of medicine that is scientific and determines peoples’ behaviours, health, and the outcome of diseases. Moreover, it suggests a deficit in knowledge in relation to health in ordinary people. It assumes that ordinary people have to be assisted and educated about health and health risks (cf. Lupton 1993), as medicine is believed to know best. This belief in the deficit model of the public understanding of scientific medical knowledge is embedded in contemporary approaches in health promotion. It is based upon the modern idea of the economical and rational individual that acts upon the information it gathers. It assumes that as once individuals are provided with the necessary scientific and numerical information on health risks; the risks of different choices in life can be compared and decided upon rationally. And when rationally weighting the costs and benefits of these choices in life, those lifestyles are chosen that result in ›good‹ health. According to Hacking (1990), this is a salient side-effect of the rationalisation and enumeration of prevention and health promotion. Individuals are submitted to an increasing control and intervention upon their health and have less freedom in determining their lifestyles. Prevention and health promotion programmes reflect such a rationalistic and deterministic approach to health. In fact, they are set up to exhort people to make the necessary lifestyle changes in their lives. For example, the prevention of cardiovascular disease is set up not only to just provide the scientific and numerical health risk information. These programmes are also set up to improve the knowledge of individuals about the interrelatedness of cardiovascular disease and lifestyles, and to change the individuals’ attitudes, self-efficacy expectations and awareness of one’s behaviour. In other words, a rationalistic

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approach to health suggests that providing individuals ›at risk‹ for CVD with sufficient scientific, numerical information and teaching them the skills to interpret and manage this information, individuals will act rationally and start living healthy lifestyles. As is the case in prevention and health promotion programmes in general, the prevention of cardiovascular diseases can thus be characterised as providing individuals with the necessary information on health and health risks and making it easier for them to take responsibility and control over their own condition and solve their health problems (Bodenheimer, Lorig et al. 2002). (Bodenheimer, Lorig et al. 2002). The Dutch Quattro Study project is an example of a prevention programme that employed a rationalistic approach to cardiovascular health. The project was set up to evaluate the effectiveness of multidisciplinary prevention of cardiovascular diseases in primary health care for patients ›at risk‹ for cardiovascular diseases (CVD) in deprived neighbourhoods. In order to establish sustainable lifestyle modifications in ›at risk‹ patients, the project had taken up an individual-oriented approach. Treatments and health advice were tailored to individuals and their unique risk profiles. However, despite the efforts, the researchers concluded that the Quattro Study project had a limited effect (El Fakiri 2008; El Fakiri, Hoes et al. 2008). After one year follow-up reductions in the risk for CVD were observed but these were not considered significant. In fact, it was concluded that the health education activities provided within the programme did not result in significant reduction in cardiovascular risk (El Fakiri 2008). In a process evaluation, the Quattro Study researchers suggested that the lack of effectiveness was the result of the low commitment to the programme of both health care professionals and participants (El Fakiri, Hoes et al. 2008). The health care professionals and the participants in these interventions had not been participating as expected; health care professionals had not delivered the interventions as planned, and participants were not compliant with the interventions as expected. The limited results of the Quattro Study, however, are not unique in this respect. Also other prevention programmes targeting cardiovascular diseases in the Netherlands report such disappointing results (see e.g. Ronda 2003; de Vries 2004;

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Ronda, van Assema et al. 2004; Harting 2005; Harting, van Assema et al. 2006; Kloek, van Lenthe et al. 2006). In the literature, though, numerous authors have argued that a solution to this lack of effectiveness of such prevention and health promotion programmes can be overcome by forcing health care professionals to better perform the interventions in daily care as planned and better urge participants to better comply with the requirements of these programmes (see e.g. the process evaluations in (Jansen, Foets et al. forthcoming). This current state of affairs points to an interesting conflict that exists within prevention and health promotion in general and in the prevention of cardiovascular diseases in particular: Although prevention and health promotion programmes exhort individuals to make the necessary lifestyle changes in their lives, they do not have that effect. When performed in practice prevention and health promotion programmes often work out differently than expected. Moreover, the »messiness« of daily practice is considered to cause these programmes to fail. Considering this »messiness« an epiphenomenon or confounder of the programme rather than an integral part of it, is the result of the deterministic perspective that is embedded in the rationalistic approach to health in prevention and health promotion. This perspective portrays ideal types of prevention and does not do justice to the actual character of prevention and health promotion practice. In order to try and understand what happens in the practice of prevention and health promotion programmes, in this chapter I use concepts from Science and Technology Studies (STS) to analyse how the Quattro Study programme was actively shaped in practice by the health care professionals and participants. STS have formulated a critique to the technological determinism that exists in modern, rationalised societies. Rather than arguing that ›technology‹ determines its use and purpose it is used for and that its development follows a preset path, STS acknowledge that ›society‹ plays an important role in the construction of technology and the subsequent form it takes. ›Technology‹ and ›the social‹ are not seen to be separate entities, but are considered to be in constant interaction and therefore they mutually shape each other. STS have argued that technological determinism is wrong and is empirically incorrect

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as it denies the role ›the social‹ has in influencing the development and construction of technology (van der Ploeg 2007). In fact, it is said not to provide a sufficient explanation for the ever-present variability in medical practice after implementation of technologies, like programmes for the prevention of cardiovascular risk. If preventive interventions did determine the effects or impact they have in medical practice, than their implementation would result in the desired effects irrespective of the medical settings within which these interventions are implemented. In other words, if this manner of reasoning was correct, implementing prevention and health promotion programmes would be successful in reducing the cardiovascular risk in individuals in society. Moreover, STS have argued that – in order to show how ›technology‹ and ›the social‹ mutually shape each other – one should study the informal processes underlying the actual use of these technologies in medical practice (Berg 1995). Therefore, I have conducted an ethnographic case study of the aforementioned Quattro Study, in which I studied what the project comprised, and how the project’s researchers, primary health care professionals and participating patients mutually shaped the intervention, and influenced the intervention’s delivery and its outcomes. The ethnographic case study design enabled to study how the project’s researchers developed and evaluated the intervention, how the intervention was delivered in primary health care practices and how both health care professionals and patients actually participated in the intervention.

The Quattro Study The Quattro Study was a multi-centred pragmatic randomised controlled trial on the effectiveness of multidisciplinary care teams in primary care for the secondary prevention of cardiovascular diseases (CVD) administered in primary health care centres in deprived neighbourhoods or Rotterdam and The Hague, the Netherlands. In contrast to conventional randomised controlled trials (RCT), like Jonvallen discusses in this book, pragmatic randomised controlled trials establish the effectiveness of interventions under routine conditions (Armitage

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1998; Hotopf 2002), in which they allow for interventions to incorporate variations in practice at the different sites and allow for targeting a heterogeneous patient population. Conventional RCTs, on the other hand, require interventions to be standardised, to be implemented uniformly among sites and to target a homogenous patient population in order to evaluate the effectiveness of interventions. The Quattro Study specifically targeted people living in deprived neighbourhoods, as the prevalence of cardiovascular risk factors is higher among individuals with a low socio-economic status and ethnic minorities than among the indigenous Dutch population (Kloek, van Lenthe et al. 2006; El Fakiri 2008). Moreover, as the cardiovascular risk consists of the non-modifiable risk factors age and sex, and modifiable risk factors, such as cholesterol, systolic blood pressure, obesity and smoking (El Fakiri 2008), the intervention aimed to achieve risk reduction in modifiable risk factors. Primary health care was considered the best setting for providing the intervention. In the Netherlands, almost all patients are registered within a general practice and the general practitioners (GPs) act as a gatekeeper in the Dutch health care system (El Fakiri 2008). The core of the Quattro Study was the structural collaboration between a practice nurse, a peer health educator, the GP, and an assistant (hence Quattro care) in providing intensified preventive care1. Multidisciplinary patient care teams were thought to improve the quality of care in general practice, as they are seen as a means of relieving the workload of GPs and to assist them in providing preventive activities (Steptoe, Doherty et al. 1999; Cullum, Spilsbury et al. 2005; Raftery, Yao et al. 2005; Callahan, Boustani et al. 2006; Rosemann, Joest et al. 2006). GPs in deprived neighbourhoods have a great deal of information about patients, but – due to their high workload – do not use this information for case-finding and secondary prevention. They lack the time and the

1

The intervention described the main tasks for the intervention team: GP (treatment task, overall medical responsibility), practice nurse (risk assessment, coordination and prevention tasks), assistant (logistic task) and peer health educator (ethnic specific health education).

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organisation to actively invite people for regular follow-up and risk profile assessments (Lobo, Frijling et al. 2003; VWS 2005). Before participants were enrolled in the intervention, individuals aged between 30–70 years with one or more registered risk factors for CVD (hypertension, hypercholesterolemia, diabetes mellitus, family history of CVD or personal history with CVD, and smoking) were selected from the five centres’ electronic GP medical records. Hereafter their risk profile for CVD was established by means of physical examination of blood pressure, weight and height and biochemical measurements of fasting glucose, HbA1c and lipid profile. Using the Framingham Heart Study risk equation their absolute risk for developing a cardiovascular event in the next 10 years was computed. Eligible participants enrolled in the intervention had a modifiable part of the absolute 10–year risk of cardiovascular disease (CVD) of at least 5%2. Eligible participants were randomly assigned to three groups. Participants in the intervention group obtained Quattro care and three-monthly assessments of their risk profile from the practice nurses. Participants from control group A received the three-monthly risk assessments performed by the assistants on top of usual GP care. A blind control group B was needed to quantify the effect of the risk assessments. This group was to receive usual GP care and was measured once at the end of the study. The effectiveness of the multidisciplinary collaboration was assessed by comparing the reduction in CVD risk achieved in participants from the intervention group with those from control group A after one year follow-up. Control group B, which aimed to quantify the effect of structured risk profile assessments performed in control group A, was compared with control group A. The follow-up period for the intervention and control group A was 12 months and the intervention programme lasted 9 months. As multidisciplinary patient care was considered a potential improvement in the provision and organisation of care services

2

See for a more elaborate description on how the Framingham Heart Study risk equation was used and how the modifiable part of the absolute risk was determined (El Fakiri, Bruijnzeels et al. 2005).

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in primary care, a Dutch insurance company facilitated the employment of practice nurses in the practices by providing financial compensation. By providing this financial compensation, they offered GPs a financial incentive to participate in the Quattro Study. In the Dutch healthcare system, insurance companies operate as a ›third actor‹ and are occupied with the organisation of care and improvements thereof by order of the Dutch government. For that reason, Dutch insurance companies often support such improvement project financially.

T h e s e t - u p o f a r a t i o n a l i s t i c p r e ve n t i o n r e g i m e The programme was developed by researchers, but was to be conducted by practice nurses in primary health care centres located in those deprived neighbourhoods where the project aimed to improve people’s cardiovascular health. Each patient enrolled in the intervention was invited to visit the primary health care centres for three-monthly individual education sessions with a practice nurse. In these sessions their risk profile was re-assessed every three months through the physical measurements of height, weight, and blood pressure levels and blood tests on glucose and cholesterol levels. Thereafter, the patients were given health educational advice on what to do to improve their cardiovascular health. According to one of the researchers of the project, these risk profile assessments were more important than the provision of just health advice, as these provided insights into the severity of the cardiovascular health status of individuals. The information from the risk profile assessments determined the necessary treatment and relevant health education, as the researcher explained: »Risk factors become more and more important. […] When a patient has a blood pressure over 160 mmHg, you not only look at the height of his blood pressure, you also have to look at other risk factors, like e.g. age, weight, length, smoking and cholesterol. […] Registering is here of utmost importance. First you have to gather all data before you can calculate the absolute risk profile of patients. Secondly, you have to motivate patients to change their risk behaviour. The practice nurse and/or peer

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health educator do have an important task in this.« (observation researcher)

Based upon this information the patients’ risk profiles for CVD could be established by adding and subtracting the negative and positive aspects of an individual’s biology and lifestyle. In line with current epidemiological evidence on cardiovascular diseases and risk factors, the researchers acknowledged that a person’s biology provided a non-modifiable part of CVD risk and a part that was modifiable and was lifestyle-related. For example: »[…] a patient’s age and gender define the risk on cardiovascular diseases (CVD) that is not modifiable. Age and gender are fixed variables in the absolute risk on CVD; e.g. men are at higher risk than women in getting CVD even when age increases.« (interview researcher) »The researcher indicates this patient has to become more physically active […] ›his weight is the most important factor; as the weight decreases, the glucose levels will decrease too‹.« (observation conversation researcher with practice nurse)

The risk profile assessment projects the anticipated chance of having a CVD event in future (Carter 1995) into the present in the form of a percentage. The height of the percentage determines the probability of such an event happening in future. In fact, the various characteristics of the individual’s biology and lifestyle are considered traits or advantages to health (Carter 1995). Whereas the individual’s age and gender, as non-modifiable factors, indicate a person’s genetic risk for CVD, the actual change of a CVD event in future is determined by the modifiable variables in the risk for CVD – a person’s weight, blood pressure, cholesterol and glucose levels. The researchers acknowledged that as the influence of a person’s biology on the risk for CVD could not be erased; the risk for CVD could only be reduced through identifying the modifiable risk factors and intervening upon lifestyles. But as they reckoned changes to health behaviours and lifestyles difficult to be achieved for patients in deprived neighbourhoods through only the provision of health risk information, an additional support system

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with practice nurses and/or peer health educators was considered essential. In other words, lifestyle, in relation to biology, was thought of as easily modifiable via additional support of practice nurses, peer health educators, advice and counselling. In order to diminish the onset of CVD in future and regulate participants towards the risk factors’ norm levels stipulated in GP guidelines3, every three months participants were also given individualised advice and counselling on the importance of regular physical exercise, adherence to regulative medication, their food intake to reduce obesity, and stopping with smoking in order for them to make the changes in their lifestyles. The risk factors norm levels were considered »the (treatment) goals patients have to meet« (conversation researcher). The health education was tailored to the specific modifiable risk factors with which a patient’s risk profile was made up and was provided verbally and through information leaflets by the practice nurses and/or peer health educators. In the Quattro Study a rationalistic prevention regime for the prevention of cardiovascular diseases was set-up in which the patients were enrolled. In fact, this prevention regime was built upon the attribution of cardiovascular risk to patients and instructed them how to engage in reducing this risk. In common with other prevention programmes, in the Quattro Study patients were encouraged to behave in a sensible and responsible way and to take appropriate actions to protect their future health (Armstrong 2007). In the prevention regime not only the patients’ current health status at the time of the three-monthly individual patient education sessions was monitored, also the progress that patients made in achieving lifestyle modifications was monitored through the recurrent use of the physical measurements and blood tests. In other words, this CVD prevention intervention facilitated the living of healthy lives (Bunton, Nettleton et al. 1995b). From a scientific medical perspective as elaborated upon in the introduction, the programme facilitated

3

In the Quattro Study, hypertensive patients had to be regulated to a norm tension of 140/90 mmHg or less. The norm value for hypercholesterolemia was an average total cholesterol (tChol) less than 5 mmol/l. And the BMI score had to be reduced to less than 27 (document manual for intervention 2000).

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patients in taking responsibility and control over their own condition and solve their health problems (Bodenheimer, Lorig et al. 2002). A structure of additional support by practice nurses and/or peer health educators was organised and considered essential for patients to do so. This prevention programme, characteristic for prevention programmes in general, provided patients ›at high risk for CVD‹ with the opportunity to care for themselves and their selves (Vaz and Bruno 2003) and underscored patients’ individual responsibility and agency therein (Lupton 1993b; Hallowell and Lawton 2002). This was evidenced by, for example, two practice nurses in conversations I had with them about the essence of prevention: »When you inform patients thoroughly the more risk factors they have, the higher the chance they could develop cardiovascular diseases, you also have to indicate patients have a responsibility in this […] You can give patients leaflets on what patients can do themselves to reduce risks, like smoking cessation, losing weight by means of dietary advice, exercise more and such, but they have to do it.« (interview practice nurse) »Patients have to ›[…] realise that lifestyle change has more effects than pills and powders‹.« (fieldnote practice nurse)

Despite these efforts to provide multidisciplinary patient care for the prevention of CVD to assist and support patients in actively managing their health within a rationalistic prevention programme, the researchers concluded that the Quattro Study project had a limited effect (El Fakiri 2008). Although after one year follow-up reductions in the risk of CVD were observed in the participants of the intervention groups and in the participants in control group A who had received regular care, these were not considered significant. The researchers concluded that although the addition of practice nurses and peer health educators in primary care for additional support of patients was assumed to improve the prevention of cardiovascular diseases, the risk for CVD was not sufficiently diminished in programme participants.

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T h e a c t u a l p r a c t i c e o f p r e ve n t i o n and the agency of patients The ethnographic study, of which the findings are used in this chapter, was nested in the project. The ethnographic findings help to explain these disappointing results of the Quattro Study. Not astonishingly, in the Quattro Study programme the health care professionals and the patients participated differently to the trial researchers’ expectations. In fact, the Quattro Study in practice was shaped by the way patients participated in the intervention and the way health care professionals related the rationalistic prevention regime to them. With the prevention regime of the Quattro Study in place as the basis for the facilitation of patients changing their health behaviours in order to prevent the onset of cardiovascular diseases in future, the practice nurses individualised the management of risk for each patient. In other words, the practice nurses, in order to facilitate patients in changing their lifestyles, translated this individual risk for CVD to patients into something that makes sense to them (Callon 1986). As one of the researchers indicated during an intervention progress meeting that was organised by the researchers to assist the practice nurses in conducting the programme, that in the actual practice of prevention a development is taking place towards a partnership model in which medical professionals have to cooperate with patients, which was also visible in the Quattro project: »[…] a shift is taking place from an authoritarian model – in which patients are told what they have to do – towards a partnership model in which you cooperate with the patient.« (observation intervention progress meeting)

In practice, this meant that the rationalistic prevention regime, which was developed by the researchers, had to be related to the patients by the practice nurses and had to be adjusted to the patient’s daily circumstances. When patients visited the primary care practices every three months, the practice nurses informed on the patients’ knowledge and perceptions of CVD, and informed on their daily circumstances. This information the practice nurses used for determining a hierarchy in risk factors

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in individual patients to be tackled. One of the practice nurses explained why she related the prevention programme to individual patients. She explained that as the daily circumstances of patients are that directive in patients’ lives, she needed to know these circumstances in order to adjust her supervision and support to. »›The practice nurse is the person for that inventory. […] A GP doesn’t see the real problems patients deal with; he only sees e.g. a high blood pressure and not the patients’ daily personal problems. To be able to supervise these patients, a practice nurse needs to understand these problems patients deal with‹.« (observation intervention progress meeting)

It was considered that as the risk for CVD comprised a conglomerate of different risk factors, not all risk factors could be tackled at once. Moreover, although prevention and health promotion in general is aimed at achieving reduction in health risks and aimed at health status improvements, the practice nurses acknowledged that the personal problems patients had to deal with on a daily basis would determine the extent of the improvements in health that could be achieved (Rapley 2008). In fact, these daily circumstances could make it difficult or impossible for patients to modify their lifestyles, even though the practice nurses supported patients in doing so. As a result those risk factors in patients were tackled first in which with minimal efforts the largest gains in risk reduction could be expected. So, for the practice nurses the daily problems and circumstances respectively determined pragmatically the order in which risk factors were treated – not primarily a formal rationalistic risk assessment model. In Jonvallen’s words, one could say that the programme’s participants are being enacted not as merely biological bodies but as individuals with personal and social problems. In fact, taking into account these daily problems and circumstances that could prohibit patients to alter their behaviours was crucial for the practice nurses, as the cooperation of patients was needed to be able to regulate their health as one ›at high risk‹ towards ›good health‹. As one of the practice nurses explained during an intervention progress meeting: »The patients’ motivation is crucial… sometimes when

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patients don’t want to lose weight, they never will« (observation intervention progress meeting). The practice of the Quattro programme was not only shaped by how the practice nurses related the programme to patients and translated it to their daily circumstances. The Quattro programme was also shaped by how the patients participated in the intervention. The extent to which patients did participate varied throughout the project. In fact, the three-monthly risk profile assessments influenced the way patients participated as well as to what degree they changed their lifestyles, as the outcomes of these assessments enabled them to make choices to what extent they conformed to the prevention regime that was set up. According to the argument of Howson (1998), risk profile assessments, the diagnostic techniques used and their capacity to objectify risks, discipline patients in making appropriate lifestyle changes. This presumes that patients are submitted to prevention regimes and assumes lifestyles and health behaviours to be easily modifiable for patients. What we saw in the Quattro programme, however, was that the level of participation in patients varied along the continuum of ›no participation‹ to ›full participation‹ and that aiming to modify lifestyle is not a unilateral process. In fact, the outcomes of the risk profile assessments helped and supported patients to variously conform to the programme. The structural risk profile assessments helped to support and motivate only those patients who aligned to the goals of the programme and translated these goals into personal goals. The outcomes of the risk profile assessments portrayed a linear and dichotomous image of the future and projected patients’ current health status as the result of the lifestyle choices that were made in the past and one’s future health as the consequence of the lifestyle choices individuals make at present. As exemplified in the next fragment of a patient consultation a practice nurse had with a patient: »›But if you eat and take your tablets regularly now, we do not have to raise your medication dose.‹ ›What do you mean?‹ ›I mean that if you eat healthier, exercise more and take your medication, you do not have to change to insulin later.‹« (observation practice nurse)

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As one of the practice nurses, for example, explained during a recurrent consult why it was important for high-risk patients to take their medication: »It is important to have a patient started on the right dose of medication in an as early as possible stage. The consequences in the long run will than be much less severe« (observation practice nurse). Although one could say that the risk profile assessments created an image of one’s future as one of ill health if one does not take control now, they did not submit all patients to this image. It persuaded only those patients to take responsibility and control over their own condition to try to solve their health problems (cf. Bodemheimer, Lorig et al. 2002), for whom this image worked appalling. In other words, only those patients participated fully according to regime of the programme, who found conformation to the programme and lifestyle change important: »as they believed they had a high risk« (interview practice nurse). As the practice nurse elaborated further, in the same interview: »They did come […] they thought it was important. I kept seeing them every three months during the consultations. But this was mainly because of the blood tests….the frequency remained high because they were sent a blood test form every three months by the researchers. That’s why they kept coming.«(interview practice nurse)

Moreover, as these risk profile assessments objectified their risk for CVD as the conglomerate of different risk factors that could or could not be modified through lifestyle changes, these assessments also enabled patients to make choices in which behavioural changes they made. For example as illustrated in a fragment from a conversation I had with a patient: »I do take my medication more regularly now, but I still eat my usual mash. I don’t like the extra fuss of eating differently. I told the practice nurse from the beginning I’m not changing that!« (conversation patient)

Like Vaz and Bruno (Vaz and Bruno 2003) have argued: as the Quattro project advocated numerous possible lifestyle changes deemed to prevent the onset of CVD events in future, it enabled patients to make choices. Though prevention and health promotion activities convey the promise of a longer and healthier

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life provided the individual’s self-control over pleasures, patients are seen to bargain between the habits they do not want to abandon and other behaviours that are thought to prevent a disease. So, although prevention and health promotion programmes convey a message of responsibility and self-control, they are not simply rationalistic regimes that submit all participants to a set of rules. In fact, the risk profile assessments did provide patients with agency. They provide the patients with the opportunity to actively shape the practice of prevention and health promotion through the extent of their participation.

Conclusion In this paper I have shown how primary care professionals and participating patients mutually shape prevention interventions. In the Quattro Study project, a rationalistic prevention regime was set up, that was built upon the attribution of cardiovascular risk to patients and instructed them how to engage in reducing the risk for CVD and the chance of having CVD events in future. In common with other prevention programmes, the Quattro Study encouraged patients to behave in a sensible and responsible way and to take appropriate actions to protect their future health. However, health care professionals and patients participated differently than the trial researchers expected. In fact, this paper showed that although a rationalistic prevention regime was set up, both health care professionals and patients actively shaped the practice of prevention. The practice of the Quattro Study was shaped by the way patients participated in the intervention and the way the health care professionals related the prevention regime to them. In the context of prevention programmes that are often rationalistic in nature, that are based upon the ›taming of chance‹ and in which risk profile assessments are used to systematically and objectively monitor the health status of individuals (Moreira 2007a), the health of individuals is presumed to be mastered and controllable. The increasing control and intervention upon individuals’ health, as Hacking (1990) has argued, is a salient side-effect of the rationalisation and enumeration of prevention and health promotion, in which a direct

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relation between scientific, medical information and ›good health‹ in individuals is presumed. However, as the ethnographic analysis shows, there is no such direct relation between health risk information and ›good health‹. As in many social science studies, the ethnographic analysis shows that individuals live relatively stable lives rather than changing their habits due to scientific, medical information and intervention. Firstly, the researchers of the Quattro programme defined the programme as ineffective in achieving reductions in cardiovascular health risk in patients. And secondly, patients were not submitted to the rules of the prevention regime that was set up; within the context of this particular preventive intervention patients were seen to have agency. In fact, patients made choices to what extent they conformed to the programme and to what lifestyle and behavioural changes they incorporate into their lives. The programme persuaded only those patients to participate fully who aligned themselves to the rules of the prevention regime and personalised its goals. Although prevention and health promotion programmes ultimate aim is the mastery and control over the health of individuals, the ethnographic analysis problematises this ultimate aim. In fact, with the biological and physiological make up of individuals considered as non-modifiable risks to cardiovascular health, lifestyles and health behaviours – or better ›the social‹ – have become the target of medical intervention and restoration in contemporary prevention and health promotion (Scott and Freeman 1995). In relation to biology, lifestyles and health behaviours are considered easily modifiable. The provision of health risk information and systematic monitoring that make up contemporary prevention regimes, are considered the panacea for achieving the wished-for changes in lifestyles and health behaviours in patients for preventing diseases in general and for preventing cardiovascular diseases in particular (Aronowitz 1998). However, ethnographic analysis shows that lifestyle and health behaviours are not easily modifiable. Although they are the target in contemporary preventive interventions, the lives of patients in their respective social contexts (Beck, this book) and their daily circumstances are not taken into account when developing these programmes; in the practice of prevention and health promotion programmes

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health care professionals have to relate and translate these programmes to patients to possibly achieve changes in lifestyles and health behaviours. Thus, prevention and health promotion programmes have a double obligation (Mckie 1995). On the one hand, prevention programmes aim at the improvement of the health status of ›at risk‹ patients, and on the other hand, in these programmes rationalistic prevention regimes have to be tailored, related and translated to individual patients as their cooperation is needed. Taking this double obligation into account prevention and health promotion than is no longer solely about transferring the responsibility for good health to patients, it is about accepting the ›the social‹ as integral part of prevention and health promotion practices.

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Hacking, Ian (1990). The Taming of Chance. Cambridge, Cambridge University Press. Hallowell, Nina and Julia Lawton (2002). »Negotiating Present and Future Selves: Managing the Risk of Hereditary Ovarian Cancer by Prophylactic Surgery « Health 6(4): 423443. Harting, Janneke (2005). Individual lifestyle advice: development, implementation and evaluation within the Hartslag Limburg cardiovasculair project. Care and Public Health Research Institute (CAPHRI), Faculty of Health Sciences, Maastricht, University of Maastricht. Harting, Janneke, Patricia van Assema and Nanne K. de Vries (2006). »Patients’ opinions on health counseling in the Hartslag Limburg cardiovascular prevention project: Perceived quality, satisfaction, and normative concerns« Patient Education and Counseling 61(1): 142-151. Hotopf, Matthew (2002). »The pragmatic randomised controlled trial« Advances in Psychiatric Treatment 8: 326-333. Howson, Alexandra (1998). »Surveillance, knowledge and risk: the embodied experience of cervical screening « Health 2(2): 195-215. Hunter, David J. (2003). Public Health Policy. Cambridge, Polity Press. Jansen, Yvonne J.F.M., Marleen M.E. Foets and Antoinette A. de Bont (forthcoming). »The contribution of qualitative research to the development of tailor-made community-based interventions in primary care; a systematic review« European Journal of Public Health. Kloek, Gitte C., Frank J. van Lenthe, Peter W.M. van Nierop, Maria A. Koelen and Johan P. Mackenbach (2006). »Impact evaluation of a Dutch community intervention to improve health-related behaviour in deprived neighbourhoods« Health and Place 12(4): 665-67. Lobo, Claudia M., Bernard D. Frijling, Marlies E.J.L. Hulscher, Roos M.D. Bernsen, Joze C. Braspenning, Richard P.T.M. Grol, Ad Prins and Johannes C. van der Wouden (2003). »Organisational determinants of cardiovascular prevention in general practice« Scandinavian Journal of Primary Health Care Analysis 21(2): 99-105.

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Lupton, Deborah (1993). »Risk as Moral Danger: the Social and Political Functions of Risk Discourse in Public Health« International Journal of Health Services 23(3): 425-435. Mckie, Linda (1995). »The art of surveillance or reasonable prevention? The case of cervical screening.« Sociology of Health & Illness 17(4): 441-457. Moreira, Tiago (2007) »How to Investigate the Temporalities of Health« Forum: Qualitative Sozialforschung / Forum: Qualitative Social Research 8, 60 paragraphs Porter, Theodore M. (1995). Trust in Numbers; The Pursuit of Objectivity in Science and Public Life. Princeton, New Jersey, Princeton University Press. Raftery, James P., Guiqing L. Yao, Peter Murchie, Neil C. Campbell and Lewis D. Ritchie (2005). »Cost effectiveness of nurse led secondary prevention clinics for coronary heart disease in primary care: follow up of a randomised controlled trial« British Medical Journal 330(7493): 707-711. Rapley, Tim (2008). »Distributed decision making: the anatomy of decisions-in-action« Sociology of Health & Illness 30(3): 429444. Ronda, Gaby (2003). The Dutch heart health community intervention ›Hartslag Limburg‹, an evaluation. The Maastricht Research Institute for Prevention and Care (HEALTH). Maastricht, University of Maastricht. Ronda, Gaby, Patricia van Assema, Erik Ruland, Mieke Steenbakkers and Johannes Brug (2004). »The Dutch Heart Health Community Intervention ›Hartslag Limburg‹: design and results of a process study« Health Education Research 19(5): 596-607. Rosemann, Thomas R. , Katharina J. Joest, Thorsten K. Koerner, Reiner S. Schaefert, Marc H. Heiderhoff and Joachim S. Szecsenyi (2006) »How can the practice nurse be more involved in the care of the chronically ill? The perspectives of GPs, patients and practice nurses« BioMed Central Family Practice 7, 14 doi:10.1186/1471-2296-7-14: doi:10.1186/14712296-7-14 Scott, Sue and Richard Freeman (1995). Prevention as a problem of modernity: the example of HIV and AIDS. Medicine, Health and Risk; Sociological Appraoches. J. Gabe. Oxford/ Cambridge, MA, Blackwell Publishers Ltd.: 151-170.

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Steptoe, Andrew, Sheelagh Doherty, Tony Kendrick, Elizabeth Rink and Sean Hilton (1999). »Attitudes to cardiovascular health promotion among GPs and practice nurses« Family Practice 16(2): 158-163. van der Ploeg, Irma (2007). Infonomie en nieuwe media: Vragen bij een digitaliserende samenleving. dept. Infonomie en Nieuwe Media. Heerlen, Hogeschool Zuyd. Vaz, Paolo and Fernanda Bruno (2003) »Types of Self-Surveillance: from abnormality to individuals ›at risk‹« Surveillance & Society 1, 272-291 VWS (2005). Primary Health Care in the Netherlands; The nature, structure, financing, regulation, supply of, and training and demand for primary health care in the Netherlands. J. Poorter. The Hague, Ministry of Health, Welfare and Sport, The Netherlands.

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Many major reforms undertaken in affluent western welfare states during the last two or three decades aimed to cope with what is perceived as ballooning costs. These were related to macro-social trends such as a specific demographic development, medical-technological progress, a rise of the number of the chronically ill, and fiscal pressures caused, inter alia, by an increasingly globalised economy (OECD 1995; Ham 1997). In Germany, for instance, healthcare reforms not only affected practitioners by giving them incentives to conduct their work more efficiently and cost effectively through new financing systems, but also sickness funds by introducing competition between health-insurance companies. Moreover, citizens were affected by increasing their private payments, e.g. contributions to sickness funds. Therefore, among policy makers, these macrosocial trends appeared as the major driving force to make healthcare a political problem that needed to be managed at both the macro- and the micro-level (May 2007). It is no coincidence that many health promotion and prevention programmes are being conducted in this specific time-period. Health prevention programmes aim to positively affect citizens’ decisions in leading a more healthy life, thereby minimising the burden they place on healthcare providers. While the »empowerment« of patients is an often proclaimed aim in such changes in health

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policies, it is also expected that sick people who consider their risk-factors more carefully, also contribute to a reduction in health care spending. Clarke et al. (2003) have noticed that in a process of »biomedicalization«, more focus is directed on risk and surveillance and thus turns health, not illness, into the problem that needs to be solved. In the process of biomedicalization, a Foucault’ian medical gaze (Foucault and Seitter 1973) is no longer at work in the hospital or clinic only, but in many realms of everyday life, disciplining citizens to take more responsibility for their own health. For instance, by reflecting large-scale studies that assess the risk of lung cancer and cardiovascular diseases, people are encouraged to quit smoking, eat healthy food, engage in physical exercises, and so forth. In other words, people are conceptualised as calculative subjects (Moreira 2007b) or as what can be termed preventive selves (Niewöhner 2007). In the following sections, this study reports from patients with chronic heart failure that are equipped with telehealth technologies that monitor their specific risk-factors – bloodpressure and weight – and afterwards automatically transmit them to telemetric centres where telenurses evaluate the data and decide whether the patients’ general condition is worsening or stable. These techniques were approved in several randomised controlled trials (Zugck, Nelles et al. 2005; HeinenKammerer, Kiencke et al. 2006; Köhler, Schieber et al. 2007; Katalinic, Waldmann et al. 2008b; Katalinic, Waldmann et al. 2008a; Müller, Schwab et al. 2008), suggesting that they are an appropriate tool to control costs – especially since they reduce the sick persons’ hospitalisation rates or their average length of stay in hospital. By drawing on recent theses, concepts and ideas from scholars coming from interactionist science & technology studies, this paper analyses the work involved in being a sick person who is not only chronically ill but also equipped with telemedical measurement devices. This study shall not only highlight similar work patterns, which Nelly Oudshoorn (2008) has observed recently, but also ask how the sick persons’ multiple identities are affected by the technology or, more generally, by the focus on risk and the above mentioned central problem of affluent western healthcare systems. Two patient-

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profiles are being identified and discussed in this paper: preventive selves and so called preventive.selves++.

Chronic Illness: the interactionist Science & T e c h n o l o g y S t u d i e s p e r s p e c t i ve Anselm Strauss and his colleagues were among the first social scientists to study the impact of chronic diseases on peoples’ bigraphies and social worlds (1965; 1984; 1988; 1997). On the basis of interviews and participant observation, they analysed the interactions of patients with hospital staff such as physicians, nurses, and other carers, but also the patients’ interactions with family-members and friends. In being inspired by the basic theses and assumptions of interactionist sociology and pragmatist philosophy, however, they were less interested in these patients’ feelings, or opinions but rather in the work they and the medical staff were doing. In the hospital, Strauss’ studies found that the work of patients goes rather unrecognized. It is, for instance, taken for granted that patients are engaging in acts of »personal housekeeping« in the hospital-room: »going to the toilet, putting out the bed light, combing hair, getting out of bed if ambulatory, feeding oneself«; likewise, patients are expected to report or articulate discomforts (e. g. to drugs) or reactions or symptoms to therapies. Concepts developed in these studies, such as »articulation work«, which is defined as »the specifics of putting together tasks, task sequences, task clusters« (Strauss 1988: 164), were understood to make visible important facets of the work being done by the sick person. Generally, then, Strauss’ studies lucidly demonstrated that patients permanently work on coping with their illness and, by doing so, they are interacting with many different actors (like relatives, nurses, physicians, etc.). Whereas the basic assumptions and principles of Strauss’ concepts have not been dismissed, current interactionist Science & Technology Studies (Clarke and Star 2008) enlarged it in important respects. Most notably, non-human actants – as suggested by symmetrical or relational approaches such as actor-network theory or the cyborg-literature (Haraway 1991; Latour 2005) – are taken into account as an important unit of

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analysis (Katia Dupret Søndergaard is developing this point in her chapter). Adele Clarke (2005), who contributed greatly to the development of this expansion in research, stated that Strauss’ and others’ interactionist studies on the one hand always acknowledged the central role of materialities such as, say, medical technologies in modern hospital infrastructures; however, they failed to do so with methodological reflexivity. Put simply, Strauss’ analyses focussed too much on people’s interaction with people but not with the also ever-present artifacts or objects. Thus, by suggesting using »the situation as the locus of analysis and explicitly includ[e] all analytically pertinent nonhuman (including technical) elements along with the human in situational maps« (Clarke 2005: 63), Clarke stands for a symmetrical interactionist analysis of semiotics and materiality. Clarke’s emphasis on the situation is crucial: it is in line with her aim to expand interactionist sociology while simultaneously using its basic concepts and epistemological foundations. The founders of symbolic interactionism – Herbert Blumer and George Herbert Mead (Blumer 1969) – claimed that the analysis of situations enables the study of symbols, i.e. objects that have a concrete general meaning. The basic assumption was that the meaning of these symbols is never stable and fixed, but may become reproduced, slightly transformed or significantly altered in a situation. According to these scholars, who also taught Anselm Strauss, the symbols’ meaning in motion can be grasped in everyday life when analysing its practical consequences. The slogan »situations defined as real are real in their consequence« (Thomas and Thomas 1970) not only reflects the pragmatists’ ideas which oppose a Cartesian line of reasoning that generally doubts claims about truth and reality and focuses on the practical consequences of situations; this also explains why Strauss and his colleagues decided not to pay attention to patients’ views and opinions, but on how they enact being chronically ill. In the following sections, this chapter reports from patients equipped with telemonitoring solutions that monitor the two important risk factors of their heart failure – weight and bloodpressure. By drawing on Strauss and other interactionist scholars, it examines the work involved in living with and using these measurement devices and therefore specifically focuses

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on the everyday encounter of the patient with the technology and the intricacies that occur in this encounter. The precise analysis underneath that is reflecting Clarke, i.e. patients’ situational interactions with actants; more specifically, it is concentrating on patients’ interaction with numbers and indicators. In a last step, by reflecting the practical consequences of these interactions, two kinds of patient-profiles are constructed – the preventive self and what is later described as the preventive.self++.

Enacting telemonitoring-technologies The empirical material presented in this chapter is drawn from semi-structured interviews with patients equipped with telemedical technology (n=25). The interviews were conducted in patients’ homes and lasted about 80 minutes on average. In some cases (n=9) follow-up interviews were conducted 6 months after the first interview in order to understand how the technologies were naturalized (Bowker and Star 1999) in patients’ everyday lives. Even though it is important to note that patients were enrolled in two differently designed telemonitoring-programmes, this study does not acknowledge this point in particular. This is because similar patterns of work and similar consequences of that work could be observed in both programmes and hence did not need to be examined further for the purpose of this chapter. What both telemonitoring-programmes had in common was that they equipped patients with weighing scales and a blood-pressure metre and that the results from patient’s daily measurements were transmitted to a telemetric centre where telenurses evaluated the results (in one project automatically, in the other, semi-automatically).

Giving the technology a home In order to keep their general condition at a stable level, patients measured their weight and their blood-pressure once daily. These parameters were defined as »risk parameters« since a rapid increase in weight, say 10 pounds in 5 days, indicates water retention in the legs, kidneys or lungs and thus a critical reduction in the heart’s pumping action. Furthermore,

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according to current guidelines, high blood-pressure must be avoided as it overextends the heart’s performance. Hence patients (are told to) monitor their weight and their blood-pressure every day. They are taught that, in order to deliver comparable results, the data should be gathered at roughly the same time, usually in the morning, and under roughly the same conditions. Because of that, most of the patients encountered were extremely aware of their measurement routines: When they woke up (or got out of bed), when they had a shower, when they took their pills or when they drank the first cup of tea or coffee did not usually happen in an arbitrary fashion but after careful consideration. Besides creating certain morning procedures, almost all of the patients have arranged a specific place where they measured their weight and blood-pressure. In most cases, this place has to have some specific features: e.g. it must be located at a specific place in the bathroom to which not everybody has access, because some scales transmit the data automatically and thus irrespective of who is actually standing on them (e.g. what happened when everybody had access was that the patient’s grandchild went on the scales and thus automatically transmitted his significantly lower figures to the patient’s electronic chart). The place where the blood-pressure is taken must consist of a comfortable seating arrangement so that one can easily sit for a few minutes and a place where the blood-pressure device can be stored after measuring in order to avoid the house starting to look like a hospital. In short, many aspects need to be arranged in order to measure weight and blood-pressure properly. When the risk-parameters are gathered, the result of this procedure is, not surprisingly, a number. This number, however, is not a cipher only but something that transports concrete sense when being enacted. Firstly, it is typed into the transmitting device. One of the patients I met, Mr. Vossmann1, explains in the following quote how he types up the day’s weight – which is 100,9 kg – in this machine before he sends it to the telemetric centre:

1

All names are aliases.

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»So: that was yesterday. You see that? Weight 100,6. And now I enter the increase in weight: 100,7, 100,8, 100,9 [he pushes the ›Plus‹ button while saying that, T. M.]. So. And now the blood-pressure. This is also a bit higher today… And for this I press… Oh… Stop! Back! So: 100,9. I made a mistake here. I have to… hold on a second! … So 100,9… Yes: now I saved it: 100,9. Yes!« (Mr. Vossmann)

In this short sequence one can see how numbers are not abstract constructs, but things, with which people need to actively deal. This involvement in practical, physical actions – seeing the weight from the day before, pressing the plus or minus button for the day’s weight, saving it and then, finally, transmitting it – certainly strongly aids a configuration, where patients indeed always know their daily weight to the last decimal. In most cases, the interaction with numbers is not over when the data is saved in the machine and transmitted to the telemetric centre; the patients do more than registering and transmitting, say, their current weight: »Mr. Diestel: And now I started documenting this… Here. (He fetches a piece of paper with the past three weeks’ results) TM: Oh, I see, you’re writing it down. Mr. Diestel: Yes. I’m writing it down. When did I start this? Ah yeah… here: on the 27th of May.« (Mr. Diestel)

Another patient documents the numbers differently: »Mr. Busse: These are my lists. You see that? Ms. Busse: He types it in a word-document. Just for fun. TM: Wow! Mr. Busse: Yes! And then I can print them out so I’ve got them for each month.« (Mr. Busse)

Most of the patients that I have encountered bought calendars in which they entered data. The most striking example of documentation work that I have seen, however, was one where data was transmitted to an electronic spread sheet where one could plot graphs and automatically calculate the month’s highest and lowest weight and blood-pressure values. From a social science perspective, it is important to pay attention to these »bagatelles« like morning routines, the apart-

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ments’ layout, patients’ personal tastes, further tools involved like calendars and electronic lists since they highlight on what a successful naturalization of the technology is relying and indeed depending. In fact, a large number of social scientists have emphasised that the patients’ willingness to actually use a measurement device is depending on the »constraints and opportunities associated with the technology in relation to their illness trajectory, their social network, and the place where it is used« (Lehoux, Saint-Arnaud et al. 2004: 618). Hence, the following section will investigate how people actually use the technology – seemingly simple and trivial devices.

Domesticating the technology’s wildness Measuring blood-pressure and weight and transmitting the results might seem easy at first glance. However, many complications occur that make it a pretty difficult and sometimes troublesome task. For example, to take the blood-pressure and weight at roughly the same time and under roughly the same conditions every day can prove to be quite a tricky exercise: some of the patients could not take the blood-pressure at roughly the same time due to sleep disorders. In these moments, they felt insecure whether to stay in bed until the time they were used to or if they should wait with the drug intake until that time even though their GP asked them to take them directly after they woke up? Other patients interviewed had problems with sitting calmly for about five minutes before they took their blood-pressure. The nurses gave them the advice to do so in order to ensure that blood-circulation was not affected by other activities. However, some patients felt they didn’t want to wait longer because they desperately wanted to smoke the day’s first cigarette. Others stated that to sit completely still in an early morning unheated apartment for five minutes is quite a difficult task in wintertime. Put simply, to create the same situation is not always easy to arrange given the diverse factors that might interfere with it. Many questions also occurred in the creation of the place where one measures oneself – the creation of the home-laboratory: some patients were wondering whether to make the device apparent which could, possibly, remind them of their

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disease or simply look like a hospital-setting at home. Others made sure their documenting files were securely locked because they did not want their partners or visiting guests to discover it since they found their weight-trajectories embarrassing. These points were not trivial for most of the patients encountered and, hence, need to be explained in more detail. Notably, the blood-pressure measurement device created most problems to which patients had to attend. After having fixed the cuff at either upper-arm or wrist, numbers occurred that simply seemed so malleable that they did not appear to be manageable at all: »My blood-pressure is fluctuating pretty much. Here, have a look… … 84, 87, 85, 63, 77, 87 [he is reading out from his calendar]. … They can’t say why it is that way… why… Well… Before.. Before I never had problems with my blood pressure. Nothing, absolutely nothing. It might be that because of the pills that I have to take, that it because of that… now… that it becomes a bit low or so…« (Mr. Diestel)

Even though from a medical point of view these diastolic pressures are nothing to worry about, Mr. Diestel did worry because they seemed too disorderly for him. He was looking for explanations but was unable to find any logical answer, which made him pretty nervous. Another patient reported that reading what he perceived as bad blood-pressure figures got him in such a state of nervousness that he called for an ambulance and was taken to hospital: »I once had a situation here where we called the ambulance because the blood-pressure increased so rapidly. It was about 200 or something. I already realized at the place where I work: I felt bad and then… I arranged for someone to give me a lift to my place and then… the bloodpressure still increased. And: then I got scared and then my wife called the ambulance. But that was a panic-reaction… I thought: ›God, what is happening with you?‹ But… When the ambulance arrived everything was quite normal. I went with them… then… to hospital for a checkup… but… everything was okay then.« (Mr. Bertram)

From these quotes one receives another impression about the agency of numbers and indicators. Instead of simply coding and translating the force of the blood-circulation on the vessels,

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they are active in the sense that they necessitate permanent comparison, sometimes leading to concern or even panic. Hence, although these technologies are supposed to support patients with chronic diseases and help solve the problem of having to monitor weight regularly, they also create new problems. Instead of giving certainty, enabling independence, a calm and easy life at home, complexities of many kinds make the measurement devices wild machines that need to be domesticated. Indeed, the domestication metaphor is useful here because it is not only patients doing something with the numbers but also numbers doing something with the patients; put simply, patients and numbers are interacting. In the next section, I want to work out two patient-profiles constructed from the data that aim to show that these patient-numbers interactions can be different and also have different practical consequences.

P r e ve n t i ve S e l ve s a n d P r e v e n t i v e . s e l v e s + + Preventive Selves The first patient group, which I call preventive selves, is eager and willing to autonomously deal with, say, the blood-pressure figures messiness. In order to do so, they create a measuring practice that explains more than the actual measured physical trait. For instance, when reading the blood-pressure, these patients read more than the actual blood-pressure but the whole context of the situation: »Since I am under this tremendous permanent stress because of my husband – that’s a permanent stress really… Since then… my blood pressure has risen quite a lot. In the morning I can have 150 to 80. Then I have… Then I wait half an hour or two hours and then I measure again and then I’ve got 125 to 78, yeah? I’ve got this jumping blood-pressure. And that’s definitely a stress-blood-pressure.« (Mrs. Busse)

Other patients occasionally attributed higher results not only to stress but also to major physical strain during the previous day, specific weather conditions, etc. But in all cases various ele-

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ments of the patients’ lives are mobilized in the process of making sense of blood-pressure figures. Importantly, these results and their interpretations had various practical consequences on patients’ lives. To quote Ms. Busse again: »I have to calm down; I must not do exhausting things and am not allowed to do exhausting work. Because exhausting work is… to mow the lawn, clean the windows and all that. That must… that’s the most recent news that I don’t do this anymore.« (Ms. Busse)

But it is not only the blood-pressure that is related to all kinds of aspects of everyday life. The current weight can also be the basis for further problematisations and reflections of daily activities. Mr. Kindler, who is pretty concerned with his weight, reports what the consequences of his strict reflection of the current weight are: »I engaged in learning more about nutrition, in particular about food that contains purine. And really… I changed my entire eating habits. I even eliminated some stuff or have them only on very special holidays (laughs). Sardines for example. I have these only once a year. Some things were completely eliminated. And salt! I’m keeping my eye on salty food!« (Mr. Kindler)

Other patients who can be classified as preventive selves not only radically changed their eating-habits, but also used their diaries to document further numbers: for example, I met people who recorded how far they had jogged. For that reason they created another column next to blood-pressure and weight – the column kilometres; to make sure that it was only exact measurements they filled in these columns, they calculated how far their running routes were. When considering these practices, hence, one can see how numbers are ultimately intertwined with diverse strategies of coping with heart failure as a chronic disease. Among preventive selves, documented numbers were not only ultimately intertwined with self-management strategies; they also operated as mediators (Latour 1994) between the home and values defined by externals, e.g. norm-ranges de-

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fined by the World Health Organisation (WHO) and related to them in most cases by the general practitioner or cardiologist. Many preventive selves were aware that this institution decided that levels above 140 mmHG in systolic pressure were classified as hypertension (at least if it is above this level over a longer period of time). Consequently, this classification scheme came to play a role in their lives: »Currently, it’s about 130 [leafing through his electronic spreadsheet]. Here: 137, 132, 142... oh well, here also... it was 141. But, then it went to 128, 145, 140... 140 again… Well currently it is a bit higher. But still this threshold has not been exceeded for a long time. So it’s ok for the moment.« (Mr. Bertram)

In the case of Mr. Bertram, the numbers acted as they mediated between him and a larger network. The network that clustered around these numbers in these cases is comprised of either physicians or nurses (and their recommendations in particular, that taught them to conduct themselves in a specific way), or the WHO, which defined the upper-limit for high bloodpressure. Reflecting an STS perspective, it is important to highlight that at the very moment Mr. Bertram accepts the 140 mmHG threshold as a firm fact, he is not aware of the uncertainties, controversies and compromises that surrounded it in its translation in the network from WHO through GPs to patients (Timmermann 2006). Another important facet of preventive selves was that they were so eager to engage autonomously with their risk parameters that they were not concerned with a possible end to the telemonitoring programme at all. When I asked them what would happen if they no longer had the support of the telemonitoring-centre, their answers were very similar: »I wouldn’t care if this programme ended. I’ll continue to monitor the weight and blood-pressure on my own.« (Mr. Friedrich)

Because of the described traits and categories, those patients classified as preventive selves can be described as being willing to individually take on as many tasks as possible involved in disease management and trying to avoid delegating any of them

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to health professionals. Rather, they try to be actively engaged in shared-decision making and treatment processes and regarded themselves as capable of adequately grasping medical information and appropriately dealing with it.

Preventive.selves++ Yet there is also another way of coping with chronic diseases or, more precisely, risk-parameters: those who I refer to as preventive.selves++. They are not so much concerned with looking for explanations and finding reasons for the blood-pressure figures malleability. Rather, preventive.selves++ appreciated the fact that they were under the scrutiny of medical experts, i.e. the telenurses: »If there is anything wrong, if my weight is too high, for example, the telenurse calls and says: ›Hello!‹« (Mr. Schmidt)

Among preventive.selves++, responsibility for one’s health is delegated to the telemetric centre and not handled autonomously as among preventive selves. In this patient profile, people rather actively demanded support and advice instead of looking for ways of how to cope with the disease themselves. They appreciated being linked to and dispersed over networks of expertise with the assistance of telecommunication technologies. The »++« shall emphasise exactly this point: Deriving from computer language C++, the notion of the »preventive.self++« acknowledges that it is indeed possible to »datacise«, network and divert physical phenomena in a standardised way. Preventive.selves++ were not sceptical or anxious about that. Quite the opposite: they demanded it. Mr. Diestel is a good example of this type of person. When the telenurse announced that her next call would be in 12 weeks time because she wanted to enforce that he monitors himself, he was quite afraid: »I found that a bit long – the time-distance. Well, and then I spoke to the telenurse and I said that my blood-pressure is weird somehow. ›Yes‹, she said, and I said then,.. I say ›I’d rather you’d call me in 6 weeks. Because 12 weeks is a long time I think‹. ›Well‹, she said, ›is that possible?‹« (Mr. Diestel)

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In Mr. Diestel’s reaction one can see how telemonitoring-programmes are appropriated differently by the two kinds of patients. Mr. Diestel was expected to learn to discipline himself (i.e. to become a preventive self); however, he rather preferred to be controlled by experts (i.e. to become a »preventive.self++«). The monitoring devices are almost like »electronic organs« (Mitchell 2003: 2), they become embodied and it is this networked body that is being appreciated. However, having an interconnected body and preferring to be under professional scrutiny did not necessarily mean that these patients did not change their eating habits. Contrary, they did so but their level of commitment to engaging in a healthier lifestyle seemed to be less pronounced. Mr. Vossmann explains what he changed since he had been in the telemonitoring-programme: »Before I lived better… no… not better – that’s nonsense. Err… well… differently. I ate different things. How shall I put this? Before I ate a lot of fat stuff and all that. And now, since recently... I eat more vegetables!« (Mr. Vossmann)

Of course, the ambivalence in Mr. Vossmann’s quote is interesting. It was not exactly better when he ate »fat stuff« but, more neutral, »different« – i.e. in this quote one can see that he on the one hand was reflecting nutritionists’ advice but still appreciated the eating-habits they dismiss. He accepted the claim that vegetables are healthier, but that does not mean that he is too concerned with purine and salt in the food he consumed. Hence, Mr. Vossmann indicated that he is not as strict with altering eating habits as his preventive self counterpart. Consequently, preventive.selves++ also gave different answers to the question of what would happen if they no longer had the telemetric-centre around them. Instead of indicating that this would not matter since they could take on the relevant tasks themselves, they delivered statements like this: »I would be stupid [if I´d stop this], wouldn’t I. I have all this support. In case there is anything wrong with my heart they’re right there. They are calling right away. And they would also call my general practitioner.« (Mr. Tohr)

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In other words, the preventive.self++ appreciated being under control of the telenurses; they relied on them and the machinery in case anything happened. In sum, it becomes clear that is is indeed possible to monitor and to network individuals along predefined categories (such as risk-parametres, norm-values, etc.) in a standardized way. Patients of both profiles do the work that is necessary in order to enable the measurement and transmission of data; both are, to use a rather technical term, ›compliant enough‹. However, different consequences of patient-number interactions could be observed: for preventive selves, telemonitoring technologies were an incentive to actively work on their physical status and to constitute themselves according to ideals of health. Preventive selves were eager to autonomously and proactively deal with personal risk-factors. They wished for independence and wanted to be in control of their bodies. The preventive.self++ however, is an individual and a collective self. The »++« is meant to indicate that among these patients, they actually preferred to be linked to and distributed across networks of expertise with the assistance of telecommunication technologies (Rapley 2008). These patients felt better being assured that telenurses had an overview over their body trajectories so they were less in charge of keeping it themselves. Hence, if numbers have such far reaching consequences so that people change their diets, etc. this is not necessarily due to people actually knowing their risk parametres. Rather, it is a question, to put it in interactionist reasoning, of evaluation matrices (Shibutani 1955). Preventive selves and preventive.selves++ apply different perspectives on health, prevention, the body and the self partly due to a different socialisation. Without elaborating this point in detail, it could be indicated that the practices of preventive selves and preventives.selves++ correspond with different forms how people take care of themselves, physically, intellectually and how they value being under scrutiny or living in autonomy and independence. It could roughly be indicated that the practices of the two patient profiles correspond with different distributions of social and cultural capital (Bourdieu 1989) among them.

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B o d y- I d e n t i t y T r a j e c t o r i e s The aim of the empirical study was to engage in a Straussinspired study that tries to understand the work involved in being chronically ill; however, as already stated above, the way this work was being analysed differed from Strauss’ strategies insofar as special attention was directed to what recent scholars from science and technology studies termed actants – i.e. the nonhuman or material. For that reason, this study did not pay too much attention to patients’ interaction with other humans but with these actants; more precisely, it asked for the interactions of patients with numbers and indicators arguing that both of the latter had agency. The way numbers and indicators are done make them mediators between home and a larger institution (like the hospital or the WHO) and produced concrete practical consequences; an increase in weight, e.g., had as a consequence that people ate or drank less; a higher blood pressure sometimes lead to less-exhausting activities or to patients drinking less coffee, etc. In this section, another analytical tool of Anselm Strauss and his colleagues is used in order to capture how the technological devices are naturalized by the two different kinds of patients – preventive selves and preventive.selves++. Strauss used the metaphor of the bodybiography-trajectory to emphasise the problematic nature of a body-mind-dualism and tried to highlight that bodies and biographies – one could also say people’s experiences – are intertwined and in motion. Similar to earlier interactionist scholars, who analysed symbols’ meanings as something that becomes reproduced or altered in temporally and spatially limited moments, Strauss stated that bodies need to be understood as something relational and processual and not as a pregiven, stable entity. The trajectory metaphor fits perfectly with the aim to express the highly contingent and unpredictable paths that both bodies and biographies can take; the term is used in ballistics and tries to capture the unforeseeable processes, dynamics and transformations of flying objects (see Strübing 2007: 118). Put simply, Strauss used the term in his studies on the chronically ill, to emphasise that, through permanent interaction, body and biography permanently transform each other in unpredictable ways.

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In more recent interactionist studies, the biography metaphor was problematised and displaced through »identities«. The plural is crucial since it highlights that people never have one single identity but multiple co-existing identities. Stefan Timmermans (1996) for instance shows that peoples’ identities disappear in the moment of a heart attack: in the moment that the ambulance arrives, the only thing that counts is to save the patient’s life. In the moment they arrive the »paramedics do not care about shame, prudishness, death wishes or even consent of the patient. Their gloved hands cut through expensive clothes, feel for a pulse in the groin area, stick needles and send a current up to 360 Joules through the body when certain cardiac rhythms appear. [...] They are expected to do everything in their power to save lives« (Timmermans 1996: 777). In other words, in that very moment of saving lives, people are reduced to being a dysfunctional body only. Their religious backgrounds, their age, gender, political beliefs, family situation etc. are not paramount. Timmermans’ point of multiple identities becoming aligned to the body-trajectory is very useful for understanding the different body-biography-trajectories of preventive selves and preventive.selves++. As elaborated in the previous section, the agency of numbers and indicators is rather distinct among those I termed preventive selves. They become very sensitive to bodily events and are the ones for who many of their identities (the identity of a husband, a colleague at work, etc.) become more and more linked to the body-trajectory; e.g., stress with the husband, the routine of avoiding drinking a further cup of coffee or not going out in the garden, etc. are explained through the lenses of blood-pressure and weight trajectories. Figure 1 tries to demonstrate what the specific body-biography-trajectory of preventive selves is: Multiple identities coexist before a person comes into the hospital due to a heart attack (or another event of the kind which leads to chronic heart failure afterwards). Shortly after that event, and after the patient agrees to it, he begins the telemonitoring-project. The arrows between the trajectory of the telemonitoring-project and the body trajectory illustrate what Leigh Star and Geoffrey C. Bowker would call »torque« (1999), i.e. the pulls involved in a body-biography-trajectory. In this

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Figure 1: Body-Identity Trajectories of Preventive Selves specific trajectory, torque is derived from medical perspectives, first taught by physicians, tele-nurses and other medical personnel and then – after a period of disciplinations – manifests itself in numbers. As a consequence, the patients’ multiple identities align to the body trajectory – i.e. the patients’ identities are more and more determined by the body-trajectory. Body-identities trajectories of »preventive.selves++«, however, look somewhat differently. Most importantly, torque is not a force of relevance and far-reaching consequences in these social worlds. As stated above, people do change some of their eating-habits and apply a somewhat healthier lifestyle. However, as responsibility for their own health is at least partly delegated to the telenurses, multiple identities of preventive. selves++ become less closely aligned with the body-trajectory.

Figure 2: Body-Identity Trajectories of Preventive.Selves++

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Discussion In his analysis on the hard work involved in coping with chronic illnesses, Carl May noted that »the tremendous epidemiological explosion in chronic illness since the 1950s has brought in its wake not only major changes in the distribution and experience of illness and ill-health, but also major changes in the work of being ill and managing illness.« (May forthcoming) Notably, people with chronic diseases are expected to appropriately interpret and act on the medical information they are given. Thus, responsibilities that were in the hands of experts traditionally are now newly distributed among various actors in healthcare, including sick people themselves. In this article I argued that this argument is certainly comprehensible in the case of individuals I classified as preventive selves, however, it is not fully applicable to those who have been termed preventive.selves++. It is only the first type who constitutes him or herself according to an ideal of health by taking on the role of being willing and capable of coping with chronic diseases on their own. There is an important lesson in these findings on the layout of health promotion and prevention programmes. Very often, variants of the homo economicus are being inscribed (Akrich 1992) into them that do not always match what is actually encountered in practice: the telemonitoring programmes that aim to make people aware of their risk-parameters assume a certain degree of rationality, self-discipline, and autonomy on the part of the patient. What is not acknowledged is that patients are sometimes both helpless and powerless and that they neither feel willing nor capable of dealing with medical information. Other studies that analysed telemonitoring-programmes from a social science perspective (Finch, Mort et al. 2005; May, Finch et al. 2005; Langstrup and Winthereik 2008; Lehoux 2008) also argued that many of these programmes ignore people’s possible need to have a face-to-face encounter with a physician and to let patients take on more responsibility for their own health might also be a burden for them. Hence, »it will be necessary to develop a more detailed understanding of how people (not only patients, but also professionals and

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others) make sense of technology as part of routine management of health and illness.« (Finch, Mort et al. 2008: 93). While this study intended to feed into this, it also raises the point that more general questions need to be considered when dealing with different perspectives on and enactments of telemonitoring technologies. In a moral climate where the value of health and the focus on risk and surveillance is predominant (as described by Clarke et al. for the process of biomedicalization), the activities and approaches of preventive.selves++ might be regarded as morally wrong. Therefore, the specific layout of the telemonitoring projects might discriminate against those who conduct themselves differently and where the techniques have practical consequences other than those originally intended. Currently, a similar problem can be studied in various prevention programmes fighting obesity which are also interpreted as processes of the somatisation of sociality, race or ethnicity (Beck and Niewöhner 2006), i.e. the process of reducing interdependencies of physical bodies, social practices and identities to biological ones. Simply put, the problematisation of obesity or, more generally, the problematisation of habits regarded as morally wrong may also appear as the problematisation of the specific behaviour and lifestyles of marginalised people – whatever they specifically are. Thus, this study offers a word of caution that despite optimistic claims and expectations, telemonitoring technologies might not per se be capable of controlling the sick persons’ general condition. Rather, it seems important to take into account different lifestyles, habitus and practices of social worlds and – importantly – the implicit image of the patient that is inscribed and acts through health promotion and prevention programmes.

References Akrich, Madeleine (1992). The description of technical objects. Shaping technology/building society: Studies in sociotechnical change. Wibke E. Bijker and John Law. Cambridge (MA), MIT-Press: 205-244.

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Beck, Stefan and Jörg Niewöhner (2006). »Somatographic investigations across levels of complexity.« Journal of BioSocieties 1(2): 219-227. Blumer, Herbert (1969). Symbolic Interactionism: perspective and method. Englewood Cliffs, NJ, Prentice Hall. Bourdieu, Pierre (1989). Distinction: a Social Critique of the Judgment of Taste. London, Routledge. Bowker, Geoffrey C. and Susan Leigh Star (1999). Sorting things out. Classification and its Consequences. Cambridge, Massachusetts, The MIT Press. Clarke, Adele E. (2005). Situational Analysis: Grounded Theory After the Postmodern Turn. Thousand Oaks, California, Sage Publications. Clarke, Adele E., Janet K. Shim, et al. (2003). »Biomedicalization: Technoscientific transformations of health, illness, and US biomedicine.« American Sociological Review 68(2): 161-194. Clarke, Adele E. and Susan Leigh Star (2008). The social worlds framework: A theory/methods package. The Handbook of Science and Technology Studies. Edward Hackett, Olga Amsterdamska, Michael Lynch and Judy Wajcman. Cambridge, Massachusetts, The MIT Press. Corbin, Juliet M. and Anselm Strauss (1988). Unending Work and Care: Managing Chronic Illness at Home. San Francisco, JosseyBass. Finch, Tracy, Maggie Mort, et al. (2008). »Future patients? Telehealthcare, roles and responsibilities.« Health and Social Care in the Community 16(1): 86-95. Finch, Tracy, Maggie Mort, et al. (2005). »Telecare: perspectives on the changing role of patients and citizens.« Journal of Telemedicine and Telecare 11: 51-53. Foucault, Michel (1973). The birth of the clinic; an archaeology of medical perception. New York, Pantheon Books. Glaser, Barney G. and Anselm Strauss (1965). Awareness of Dying. Chicago, Aldine Transaction. Ham, Chris (1997). Health Care Reform - Learning from International Experience. Buckingham, Philadelphia, Open University Press. Haraway, Donna J. (1991). Simians, Cyborgs, and Women. The Reinvention of Nature. New York, Routledge.

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Heinen-Kammerer, Tatjana, Peter Kiencke, et al. (2006). Telemedizin in der Tertiärprävention: Wirtschaftlichkeitsanalyse des Telemedizin-Projektes Zertiva bei HerzinsuffizienzPatienten der Techniker Krankenkasse. Prävention. Ausgewählte Beiträge des Nationalen Präventionskongress Dresden, 1. und 2. Dezember 2005. Wilhelm Kirch and Bernhard Badura. Berlin, Springer. Katalinic, Alexander , Annika Waldmann, et al. (2008). »The TeleGuard trial of additional telemedicine care in CAD patients. 2 Morbidity and mortality after 12 months.« Journal of Telemedicine and Telecare 14(1): 22-6. Katalinic, Alexander, Annika Waldmann, et al. (2008). »The TeleGuard trial of additional telemedicine care in CAD patients. 1 Utilization of the system.« Journal of Telemedicine and Telecare 14(1): 17-21. Köhler, Friedrich, Michael Schieber, et al. (2007). »›Partnership for the Heart‹ – Entwicklung und Erprobung eines neuen telemedizinischen Monitoring-Systems.« Deutsche Medizinische Wochenschrift 132(9): 458-60. Langstrup, Henriette and Brit Ross Winthereik (2008). »The Making of Self-Monitoring Asthma Patients: Mending a Split Reality with Comparative Ethnography.« Comparative Sociology 7(3): 362-386. Latour, Bruno (1994). »On Technical Mediation: Philosophy, Sociology Genealogy.« Common Knowledge 3: 29-64. Latour, Bruno (2005). Reassembling the Social: An Introduction to Actor-Network Theory. Oxford, Oxford University Press. Lehoux, Pascale (2008). »The duality of health technology in chronic illness: how designers envision our future.« Chronic Illness 4(2): 85-97. Lehoux, Pascale , Jocelyne Saint-Arnaud, et al. (2004). »The use of technology at home: what patient manuals say and sell vs. what patients face and fear.« Sociology of Health & Illness 26(5): 617-644. May, Carl R. (2007). »The clinical encounter and the problem of context.« Sociology – the Journal of the British Sociological Association 41(1): 29-45. May, Carl R. (forthcoming). Mundane Medicine, Therapeutic Relationships, and the Clinical Encounter: Current and Future Agendas for Sociology. Handbook of the Sociologcy of

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Health, Illness, & Healing: A Blueprint for the 21st Century. Bernice Pescosolido, Jack K. Martin, Jane D. McLeod and Anne Rogers. New York, Springer. May, Carl R., Tracy Finch, et al. (2005). »Towards a wireless patient: Chronic illness, scarce care and technological innovation in the United Kingdom.« Social Science & Medicine 61(7): 1485-1494. Mitchell, William J. (2003). Me++: the cyborg self and the networked city. Cambridge, MA; London, The MIT Press. Moreira, Tiago (2007). »How to Investigate the Temporalities of Health.« Forum Qualitätive Sozialforschung Vol. 8(No. 1 (2007), Art. 13): 60 paragraphs. Müller, Axel, Jörg O. Schwab, et al. (2008). »Telemedizin in der Kardiologie. Welche Anwendungen sind reif für die klinische Praxis?« Deutsche Medizinische Wochenschrift 133(40): 2039-44. Niewöhner, Jörg (2007). »Forschungsschwerpunkt: Präventives Selbst – Herz-Kreislauf Erkrankungen im Jahr der Geisteswissenschaften.« Humboldt-Spektrum 1: 34-37. OECD (1995). New Direction in Health Care Policy. Paris, Organisation for Economic Cooperation and Development. Oudshoorn, Nelly (2008). »Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology.« Sociology of Health & Illness 30(2): 272-288. Rapley, Tim (2008). »Distributed decision making: the anatomy of decisions-in-action.« Sociology of Health & Illness 30(3): 429-444. Shibutani, Tamotsu (1955). »Reference Groups as Perspectives.« American Journal of Sociology 60(6): 562-569. Strauss, Anselm (1984). Chronic illness and the quality of life. St. Louis, Mosby. Strauss, Anselm (1988). »The Articulationof Project Work: An Organizational Process.« Sociological Quarterly 29(2): 163-178. Strauss, Anselm L., Shizuko Fagerhaugh, et al. (1997). Social Organization of Medical Work. Edison, Transaction Publishers. Strübing, Jörg (2007). Anselm Strauss. Konstanz, UKV-Verlagsgesellschaft. Thomas, William Isaac and Dorothy Swaine Thomas (1970). Situations defined as real are real in their consequences.

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Social psychology through social interaction. Gregory P. Stone and Harvey A. Farberman. Waltham, Xerox Publishers: 54155. Timmermann, Carsten (2006). To Treat or Not to Treat: Drug Research and the Changing Nature of Essential Hypertension. The Risk of Medical Innovation: Risk Perception and Assessment in Historical Context. Studies in the Social History of Medicine. Thomas Schlich and Ulrich Tröhler. London, Routledge: 133-147. Timmermans, Stefan (1996). »Saving lives or saving multiple identities? The double dynamic of resuscitation scripts.« Social Studies of Science 26(4): 767-797. Zugck, Christian, Manfred Nelles, et al. (2005). »Telemedizinisches Monitoring bei herzinsuffizienten Patienten Welche. Befundkonstellation verhindert die stationare Wiedereinweisung?« Herzschrittmacherther Elektrophysiol 16(3): 176-82.

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Epilogue : Translating Ex pe rience into Biomedic al Assemblages . Observa tions on European Forms of (Imagine d) Participa tor y Ag e nc y in Healthca re STEFAN BECK

The following pages cannot rightfully claim to be an epi-logue – rather, they are attempting something akin to an aside-logue to the issues analysed in this book. Instead of focusing on practices of health promotion per se, the article sets out to begin thinking about what could be called the »reflexive consequences« of a promotional health care approach; it aims at a partial view of the reception-end of health care promotion. What do those people who are ›health promoted‹ think and do? How do they perceive medicine, medical experts and prevention programmes? What do they expect from the medical system and what do they attempt to change? I will neither attempt to provide a comparative perspective on modes of participation of patients in diverse European medical systems, nor will I systematically dissect the complex relations of biomedical assemblages, biomedical citizenships, participatory regimes, new forms of subjectification, medical governance, and antagonistic as well as cooperative modes of knowledge production in the transaction zone between medical and patient expertise; these topics were taken

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up by the articles in this book. Instead, I will suggest some hypotheses, providing some rather pointillistic evidence and food for thought. I will use empirical findings of a multisited research project funded by the European Union1 to look into how patients and »concerned people« perceive biomedicine and the ethical challenges that come with new regimes of medical intervention. Specifically, I will argue that the concept of health promotion, as it is commonly applied in public health programmes, is hampered by an unidirectional concept of in-formation: an understanding where abstract medical knowledge is set in motion by experts to transform the lives and practices of nonexperts that are considered to be »not in the know«. As a consequence, most health interventions do not actively attempt to systematically integrate experiences of patients and nonexperts into their programmes – resulting in a systematic unreflexivity. However, patients and the »targets« of health services can try to mobilise their experiences in an attempt to translate their knowledge back into biomedical assemblages, thereby making healthcare more reflexive. The conclusion of the following argument is simple: to make preventive health policies more reflexive, a relational concept is needed that focuses on a bidirectional translation of experience and knowledge between health experts and patients/concerned people. My multi-layered hypothesis will consist firstly of a critique of the critique of medicalisation; secondly of the proposal that we are witnessing a de-socialisation of medicine due to the intensification of collaborations with other life-sciences, and thirdly the suggestion that attempts to re-socialise medicine via novel routes are well under way, for example by subjecting medicine to trials of accountability or economic interests. I will present some empirical material of how the respondents of the aforementioned research project confront the boundaries of medicine, and finally I will portray some exemplary zones of

1

The project »Challenges of Biomedicine« (EU Project no. SAS6CT-2003-510238), coordinated by Ulrike Felt in Vienna (Dept. of Social Studies of Science); see the website for participating researchers, institutions, research design and a brief summary of main findings: http://www.univie.ac.at/virusss/cobpublication.

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engagement where patients are trying to translate their experiences into the medical assemblage.

From medicalisation to biomedicalisation The dominant critique of western medicine is the critique of medicalisation, a word used to denote – in the words of sociologist Irving Zola – that in modernity »more and more of everyday life has come under medical dominion, influence and supervision« (Zola 1983: 295). However, this critique hinders a sufficiently complex analysis of recent developments in the production and application of medical knowledge. To its followers, medicalisation signifies a process in which a medical frame or definition is applied to understand or manage a problem. Well-known examples include the founding of medical institutions such as birth-houses in which poor women had to give birth under medically controlled conditions, or the recent emergence of new syndromes like Attention Deficit/Hyperactivity Disorder that define a complex behavioural phenomenon as caused by neurological states. Specifically, medicalisation describes a process of social control in which phenomena, formerly understood to be non-medical or even non-problematic, »become defined and treated as medical problems, usually in terms of illnesses or disorders« (Conrad 1992: 209).2 More often than not, medicalisation is understood to be a linear process unfolding in modernity parallel and connected to to secularisation. However, the theorem of medicalisation, while affording a powerful critique of the medical system, creates considerable blind spots. The most prominent of these allows changes in the composition of medical knowledges and the logics of medical practices to be played down in a perspective that privileges the analysis of unchanging and stable power asymmetries between science and everyday life-worlds. In particular, the ongoing

2

Early studies in medicalisation processes in the late 1960s and early 1970s took their inspiration in part from Talcott Parsons (1951), who was »probably the first to conceptualize medicine as an institution of social control« (Conrad 1992: 210).

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biomedicalization (Clarke, Shim et al. 2003) of medical knowledges and practices themselves, including the complex effects of the converging knowledges of molecular biology, genetics, biochemics, information sciences and mathematics, has revolutionised the epistemic basis of medicine. In addition to this, the »institutional sites of health-care knowledge production, distribution, and information management« (ibid: 162) are being remade, and a complex, internationally networked system is emerging that consists of hospitals, clinical research, research group practices, pharmaceutical research and development, healthcare management organisations, bioscientific and medical technologies, and supplies industries. One would expect that any analysis of this complex network would take into consideration power asymmetries that go far beyond a simple science/life-world divide as is suggested by the trope of medicalisation. Instead of taking the linear process of medicine expanding to other domains for granted, one should – following Donna Haraway and others – instead try to achieve a better understanding of the potentiality and dynamics created by the inherent hybridity of the medical system and its multiple transaction zones (see Beck and Niewöhner 2006) that are the outcome of multiple resistances – be they material, political, economical or social. Such a perspective would also shed some light on the effects of the pervasive neo-liberal reforms of medical systems in industrialised societies, which have since the 1980s reconfigured medicine beyond recognition. Both the substance and form of doing medicine have been thoroughly transformed in recent years. The interfaces between medicine and society have been reassembled, as were the forms and the modes of domination, influence and supervision that medicine could sustain or aspire to command. In consequence, new social transaction zones – between public/private, government/corporation; expert/lay, patient/consumer; physician/insurer; and university/industry/state, as well as new, related ways to »know and take care of thyself« have come into being. In the words of Adele Clarke and colleagues, historians of medicine: »we see new forms of agency, empowerment, confusion, resistance, responsibility, docility, subjugation, citizenship, subjectivity, and morality« (Clarke, Shim et al. 2003: 185). Indeed, these are »zones of

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awkward engagement« (Tsing 2004: xi) that provide »infinite new sites of negotiation, percolations of power, alleviations as well as instigations of suffering, and the emergence of heretofore subjugated knowledges and new social and cultural forms.« (Clarke, Shim et al. 2003: 185).

The desocialisation of medicine? The combined impact of the medicalisation critique from the outside and the growing Verwissenschaftlichung – »scientification« – of medical practices through their intense collaboration with biology and genetics3 has led to an increasing disengagement on the part of medical practitioners with the social and cultural issues of illness and individual suffering and, more generally, with the lives of patients in their respective social contexts. This alienation is of course also due to a growing epistemological, i.e. methodological and theoretical and institutional gap between the new biomedicalised medicine and the social sciences. From its foundation by Émile Durkheim or Max Weber in the early 20th century, sociological theory building has always privileged a resolutely anti-naturalistic explanatory strategy: an understanding of the »social« as the causal order in its own right was a cornerstone in the foundation of the new discipline. The dichotomy suggested by Wilhelm Dilthey (1923) between Erklären und Verstehen – between explaining natural phenomena and understanding social and mental phenomena – strengthened this anti-naturalism in the humanities and the social sciences. As the sociologist Ted Benton (2005) argues, this rift only grew in the 20th century as a result of recurrent attempts of biologists to extend the range of their explanatory claims to the social – be it sociobiology or evolutionary psychology. In both cases, the social appeared only as a rather uninteresting epiphenomenon of fascinating biological processes – namely of mutation and selection on the genetic level. According to Benton, this powerful – but nonetheless unrefined – re3

Clarke et al. (2003) call this process »the technoscientization of biomedicine«.

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ductionism appalled social scientists and resulted in a systematic avoidance of research into physiological phenomena. As I see it, we are currently witnessing the outcome of a dual »disengagement«: the new biomedicine is disengaging from the social, the social sciences are disengaging from the natural. Whatever the reasons, the result is, on the one hand, a marked decline in an interest in social causes of medical conditions and physiological effects of particular life-worlds, such as living social inferiority (Charlesworth, Gilfillan et al. 2004). On the other hand, a growing lack of enthusiasm for life-world interventions has developed, a disinclination to guide patients from illnessexperience to restored health. In sharp contrast to this disengagement, good old paternalistic medicine, while at the same time trying to medicalise phenomena had to boldly intervene into the life-worlds of their patients. This necessarily meant that they had to develop a much clearer picture of what it meant to be ill socially and culturally. Consequently, old-fashioned medicine in the traditions of Rudolf Virchow, Louis Pasteur and Robert Koch was highly attentive to environmental effects and lifeworld phenomena that had pathogenic effects or hindered salutogenesis. But the biomedicalization of medicine led not only to a desocializing of medical practices. The increased intermingling of medical knowledge production with other life-sciences subjected clinical medicine to processes that were more characteristic of the experimental sciences (Gieryn 1999; Stengers and Smith 2000). As Steven Shapin and Simon Schaffer put it: modern scientific knowledge became »a form of knowledge that is the most open in principle [but] has become the most closed in practice (Shapin and Schaffer 1985: 336). The historical closure of scientific epistemic cultures has not only meant the exclusion of charlatans and the untrained public or a defence against normative trespassing from religious and worldly authorities; most of all it has involved the construction of robust objects of inquiry. However, medicine’s epistemic object, the body, is peculiar in being an irreducibly dual or ambiguous entity. On the one hand there is the scientific, universal object-body known through the pathological gaze from the outside, but on the other hand there is the embodied subject-body, »the fleshy situatedness of our modes of living« (Mol and Law 2004: 43) that is beyond

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or before language, that is self-aware and socially performed and that accordingly involves completely different modes of knowing, incompatible with objectivist epistemic practices. The classic solution invented by medicine for dealing with this duality – suggested, for example, as early as 1902 by the Polish philosopher of medicine Edmund Biernacki – is a sort of multiple identity. According to this description, two types of medical practices are to be distinguished: (A) the »science of diseases«, i.e. physiology and pathology, and (B) the »art of healing«, i.e. therapeutic, highly individualised interventions into self-aware, reflexive bodies, where the patient-doctor interaction becomes central (Biernacki 2000: 49). Mark Sullivan – and with him many medical anthropologists, medical sociologists and a growing number of medical practitioners – argues that this dualism between the object-body known by modern medicine and the self-aware subject-body can be overcome by integrating people’s self-awareness back into modern medicine (Sullivan 1986). The utopia here is an integrated, holistic body concept (Harrington 2002). Transforming modern medicine will not come overnight: as Annemarie Mol and John Law convincingly argue, any attempt to simply add the patient’s self-awareness to knowledge resulting from the systematic application of the clinical or epidemiological gaze will be futile. Biomedical epistemic practices prevent the social from entering the house of medical knowledge through the front door. However, the social loiters around at the back door, waiting for unexpected and often nasty appearances – in instances of failed compliance, in psychosomatic disorders, or in the biosocial looping effects described by Ian Hacking and others. In all these cases, the social makes itself »visible« in a mode that medicine is only able to reflect upon as disturbances of established thought-styles, as disruptions of routine medical practices that have to be eliminated. Any truly integrative approach would instead require a thorough re-conceptualisation of the medical object and of medical practices that acknowledges socially embedded bodies. The impressive growth of biomedical knowledge and the success of etiological model-building in recent years do not exactly help to convince medical practitioners or researchers to re-conceptualise their object of study. The price to be paid for

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this negligence will unfortunately be a sustained ignorance of the socio-cultural dimensions of health and disease. The issue at hand, then, is to investigate the mechanisms that could bring social context back to medicine and make embodied selves visible to medical practitioners and researchers.

Re-socialising medicine via accountability trials? Although the socio-cultural dimension has been muted, other facets of the »social« are increasingly impacting scientific practices through the side-doors. We find a growing entanglement of industry and state-funded research, especially in the sector of the life sciences. Emblematic for this interpenetration is the 25-million-dollar sponsoring deal that was supposed to give Novartis almost complete control over the Berkeley Biology Department in 2000, or the fact that researchers are switching back and forth between corporate and university labs. Another route of social influence into university research is the reformulation of property rights and their expansion into new phenomena that were not proprietary before, such as »naturally occurring« proteins or gene sequences. This not only introduced market rationality into the context of basic research at universities, but opened up the possibility for mergers between risk-capital and innovative ideas at the bench. As the sociologist of science Peter Weingart (2001) observes, the result is a double dynamics of an »academisation« of industrial research and a growing commercialisation of academic research in the field of the life sciences. Accordingly, it is increasingly difficult to demarcate sites of knowledge production from sites of knowledge application and research decisions from economic decisions – a demarcation that is crucial for the dearly held definition of what »science« is and what it is not (Stengers and Smith 2000). What is of interest to me in the context of this paper is that these phenomena, (A) what I have described as the tendency towards the de-socialisation of medicine, as well as (B) the growing integration of economic rationalities and monetary »interests« into scientific practices, are both perceived to create

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accountability problems from the perspective of health care policies and health care consumers. The notion of accountability includes the application of moral as well as economic reasoning and stands for an arsenal of bureaucratic instruments and institutionalised expectations (Strathern 2000). What makes questions of »accountability« interesting from an anthropological point of view is that they shape subjects and objects in a specific way, and this way applies to all players in the field. For example, by looking at doctor-patient relationships through the lens of accountability, three patterns emerge: the patient in need, the citizen entitled with rights or some sort of amalgamated patient-citizen (see Sang 2004).

From object to subject of care? The discussions about the draft for an European Charter of Patients’ Rights are an example of where the »social« audibly knocks at the door of medicine, using accountability as the knocker: the charter defines fourteen patients’ rights, seeking to »guarantee a ›high level of human health protection‹ […], to assure the high quality of services provided by the various health services […] throughout the entire territory of the European Union« (Network 2002). The European draft Charter is based on the French Charter for hospital patients, that states: »Le patient hospitalisé n’est pas seulement un malade. Il est avant tout une personne avec des droits et des devoirs.« (Circulaire ministérielle n° 95-22 du 6 mai 1995). The Charter attempts nothing less than to subject biomedicine and health care institutions, be they private or public, clinical work or research, to Article 35 of the Nice Charter of Fundamental Rights, framing medicine as a dependent subsystem of society. This is the antithesis of the self-image of science understood as a truthproducing container shielded from society as described by Shapin and Schaffer. Interestingly enough, Part Three of the draft Charter defines the »rights of active citizenship«, which include the right of citizens to perform »auditing and verification activities« in the European health care systems, as well as the right to participate in policy-making in the area of health. In short, the Charter tries to develop a route suitable for making

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parts of the subject-body known to medicine, that is to say: it uses the instruments of accountability trials to translate the patients’ points of view, desires and needs into the biomedical assemblage. The Charter is, however, characterised by a specific ambivalence. Although it explicitly tries to strengthen the role of patient associations in monitoring the performance of health care systems and setting research agendas, the language of individual rights is used throughout the document and the core idea of protecting the autonomy of patients accentuates the concept of the individual as a consumer of health products. Combined with the implementation of bureaucratic instruments of accountability that require well-defined deliverables, a standardisation of health interventions as well as a formalisation of patient-doctor relations might be a rather unintended consequence. The highly standardised »informed consent forms« could serve as a model in this regard. Despite the best intentions, they do not primarily produce informed patients: instead, they mainly serve to protect physicians against redress and litigation. Given these prospects, a recent intervention of the European Ombudsman, political scientist Nikiforos Diamandouros, is relevant. He distinguishes between two models of doctor-patient relationship that are based on two different ideas of »what equality and autonomy should mean« (Diamandouros 2005: 7). Diamandouros calls the first model »consumerist and depicts it as influenced by the American model, which tries to compensate for the inequality of knowledge and expertise of patients and physicians by supplying full information and giving patients unconstrained choice. The alternative model, termed »communicative« and which is his ideal »European model – if I interpret the Ombudsman correctly – does not try to overcome power asymmetries between patient and physician through a flow of medical knowledge. Instead, it uses this asymmetry as a resource by considering the patient as an »autonomous agent making choices about one’s own life« who is in need of information, advice and even guidance (Mol 2008). What is remarkable in the context of my argument is that the communicative model of the doctor-patient relationship which does not presuppose a virtual equality provides a much

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better transaction zone for the exchange of experiential knowledge – be it the patient’s or the physician’s – than the consumerist model. This product-oriented model claims to secure power-equality through informational transparency, and is therefore restricted to formalised exchanges. It is obvious that these are idealised models; our question was how our respondents in the mentioned research project perceived these issues. For the moment, let me take up the issue of »interests« again. The aforementioned demarcation between pure, disinterested, truth-producing science on the one hand and the normatively spoilt, interest-driven life-world on the otherhas never been very convincing, either theoretically or empirically. Even in the 1930s, Robert Merton pointed out the intricate interdependence between social institutions in modernity – be it science, the military, economy, or religion – which culminated in the dynamic development of the industrial-military-scientific complex of the 20th century (Merton 1973). What has to be explained, then, is why the ideal of a disinterested scientific practice is upheld against the overwhelming evidence. Niklas Luhmann suggests that the classic theoretical exclusion of interests from epistemic practices in science established a contrafactual ideal that nevertheless served as an important means of quality control in the production of objective truths. Following this ideal, experimental data and the knowledge created from it are not ascribed to acts – since acts are per definitionem always contaminated by individual interests, motives and emotions. Instead, scientific knowledge is attributed to experience that is conceived of as being independent from individual actors and their specific interests: it is attributed to factors external to the social. Accordingly, Luhmann suggests that any sociology of knowledge production has to stick to the paradoxical operation of including the acts of exclusion of interests from their field of study into their observations. More precisely, he suggests closely observing how the exclusion and inclusion of interests in systems of knowledge production are »managed« and to what extent the potentially »contaminating« contexts of scientific practice are taken into account (Luhmann 1990). Central for my argument here are two points: firstly, the decisive role experience plays as the foundation for truth claims in science. I

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argue that members of patient associations invoke their experience as sufferers not only to make moral claims but to use it as a powerful mode of claiming the truth. The second point is a mirror image of the first: by criticising the fact that interests foreign to science are gaining importance, patients assess biomedicine in front of the backdrop of the idealised, powerful image of »pure science« in order to de-legitimise new knowledge practices. I will now present a selection of empirical material in which our respondents bring all of these problems into play at once.

Confronting the boundaries of (impure) science The following exchange is from a focus group discussion of seven participants »affected« in some way or another by genetic testing, either as patients or as experienced experts.4 The interchange develops between a female general practitioner, a male prostate cancer patient, and a male Crohn’s disease patient, both of whom are leaders of self-help groups. Referring to her medical training in the early 1990s, the general practitioner asserts: »back then [the expression] ›support group‹ was an insult amongst doctors. And now, if I think about the last months of my residency, when I worked a lot with neurologists […], they only worked with support groups. They have, that was an extension [i.e.: they used it for their purposes, S. B.].«

The leader of the Prostate Cancer Support Group, however, cautions: »There are many support groups, and no quality criteria, [there are groups] that are initiated by medical staff, as well as by doctors, [there are groups] that are initiated by pharmaceutical companies…‹ The Leader of the Crohn’s patient group (cutting in): ›…We have also realised that some doctors shamelessly abuse support groups, because

4

This focus group discussion was facilitated in the context of the aforementioned EU project (see footnote 1).

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they find out […] where there are really good people, dedicated people, they send them all to support groups, because it is too much for them, right.‹ The general practitioner: ›No, but it is clear, you are the experts. Yes.‹ The Crohn’s disease patient: ›Exactly, and that’s exactly what I want to say.‹ The general practitioner: ›Now […] as that we as doctors have finally understood that, that you are the experts, and if we finally […] want to collaborate with you, then you are surprised (laughing).‹« (focus group discussion)

The Crohn’s disease patient adds what he sees as the prevailing mind-set of many physicians: »what we as physicians are simply not able to do anymore, we give it to the support group and they should [do it].« (focus group discussion)

In this brief and very cordial exchange, there are a number of topics that recur throughout the empirical material and are of central concern to my hypotheses. First of all, all participants here claim that medical practitioners use patient groups for the delivery of emotional support, psychological stabilisation and individualised or even basic medical information. The reasons are not quite clear, but changing work conditions on the part of physicians as well as a lack of interest and training in sociopsychological issues are clearly alluded to. From the perspective of the leaders of the two patient groups, this constellation is partially experienced as abuse – it is seen as an unfair delegation of responsibilities from experts to volunteers that is clearly overtaxing the strained resources of these insufficiently funded groups. But here as well as in other exchanges the picture created by participants is more complex. Recurrent references are made to »sponsored« support groups that are financially dependent or even founded by pharmaceutical companies, the medical profession or research institutions. The work of these groups is observed with circumspection and even suspicion. But the three mentioned discussants fully agree that the social unresponsiveness of the medical system (or to be more

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precise: the indifference of physicians) is not easily overcome by the activities of patient groups. Many of our respondents see the reason of this unresponsiveness and the lack of accountability to patients’ needs as proof that science is becoming increasingly »impure«, spoiled with interests that are foreign to medicine proper. Perhaps we shouldn’t wonder: our respondents are members of liberal societies, predisposed to the view that the public good is maximised by giving the whole range of legitimate individual interests the chance of being pursued. To them, the idea of strengthening patient rights or involving patient groups in the policy process appears to be a clever fix of corporate domination in the medical field. Quite contrary to the hopes of its proponents, it seems that these voluntary activities may well widen the gap between medicine and the life-world: according to the accounts quoted above, medical practitioners seem only too happy that patient groups shoulder the burdensome work of providing information, integration and political representation to individual sufferers. This should caution against viewing the proliferation of patient groups and the current, widespread demand for participatory policies in the domain of health care and medical research simply as a sign of progress and democratisation. As already argued before, the demand for patient rights is a response to the ongoing biomedicalisation and de-socialisation of health care, but a response that might be likely to paradoxically advance this dynamics. The second central issue in the exchanges of the focus group discussions is the question of expertise – what it is and who can legitimately claim the status of being an expert. What is probably most striking in going through the material of focus group discussions and interviews is the profound scepticism, the disappointment and to some extent even the animosity that respondents who have experienced genetic testing or organ transplantation articulate when asked about their evaluation of physicians and the performance of the medical system. According to our respondents, there are several major problems that – if the statements are carefully interpreted – are perceived as caused by specific constellations of Erkenntnis und Interesse – of knowledge/cognition and interest. Our respondents perceive a pervasive hybridity of epistemic formations that is not congruent

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with established self-promotions and public expectations of scientific practices as truth-oriented and neutral. At issue here is the interpenetration of economy, politics and science I mentioned earlier.5 What we gather from our material is a snapshot of how the debates about science, the popularised findings of science and technology studies and the recent scandals in the field of science have shaped civic perceptions of scientific practice. A short exchange in a French focus group of not affected participants about the potential role of citizens’ committees in policy making is representative of this view, which understands science as a form of situated practice: A middle-aged male artist: ›[…] governments are subjected to lobbies. Right, well, lobbies are pursuing their interests, and the […] experts have links because, to be an expert, you have to have been shaped in the mould, by the networks, relationships with labs … No, personally I can see […] that [the advice of] citizens' committees […] would be as valid […] and in any case more independent than that of experts, or governments, or I don't know. [A small remark by another speaker, then he continues] And [we] could force experts to speak under oath, with checks and a non-commutable sentence if they lied.‹ A middle aged female teacher: That really shows all the trust we have in our institutions!‹ The artist again: ›Absolutely [laughs]. And in this case, I'm old enough to be able to judge. Don't you agree?‹« (focus group discussion)6

Emerging from this and many similar accounts is a rather balanced picture, far off from the worst expectations of the anticonstructivist defenders of science. Instead, it is quite a sober observation that to be an expert means that one has to be shaped in the mould, that one has to be part of a community of practice that positions every scientist in a social field that conditions his relevancies, perspectives, decisions and actions. The view of our

5

6

To put it bluntly: If you ever were guessing – according to our material, the constructivists won the science wars of the 1990s in the public vote. This French focus group was facilitated by Anne Masseran and Philippe Chavot in Marseille (see footnote 1).

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discussants is generally constructivist, not in the vulgar »anything goes«-sense but in a partially enlightened sense, fully compatible with their own everyday experiences, that their minds and deeds are shaped by economic, political and cultural conditions. While most of our respondents do not question science per se and hope that they might eventually profit from scientific progress, they do not have faith in the biomedical system that pursues specific paths of progress, trying to maximise profits for its practitioners. Lacking trust in institutions is the trope most often used to discuss this perceived tension between the ideal of science and its institutionalised forms. The critique of the performance of the biomedical system is grimmer when affected respondents review scientific practices. They assess biomedicine not only as interested practice but quite fundamentally as a specific form of knowledge practice that is only partially fit to do its job. According to the evaluation of our respondents who have had experiences with genetic testing or organ transplantation, there are three problems related to dominant biomedical knowledge practices: (A) respondents provided us with a plethora of anecdotes where insufficient, misleading, or even false information was given to patients. According to these accounts, physicians as the first, crucial point of contact with the biomedical system lack factual knowledge, either because science develops too quickly to keep up-to-date with the latest findings as a professional under the constant pressure of work, or because the problems are too complex to be dealt with by experts that received only a highly specialised training. (B) Most physicians are seen to lack emotional knowledge, so that they are not able or willing to cope with the existential problems of their patients, especially if these are confronted with the diagnosis of a potentially deadly or chronic disease. Finally, (C) biomedical experts are judged to lack experiential knowledge of what it means to cope with a severe illness that demands therapeutic interventions and confronts issues of stigmatisation on a daily basis. While those of our respondents who had no specific prior experiences with genetic testing or organ donation mostly stated that they more or less trusted the medical system, those who did have prior experiences as patients often expressed ambivalent feelings about the reliability of the medical system and

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its practitioners. They have no alternative to trust while they have many reasons to be sceptical. The following quote is from a female respondent from Germany, aged 32, who is suffering from an inherited cardiomyopathy and is on the waiting list for a heart transplantation. Note that she uses the impersonal German »man« (one) to distance herself from her mixed feelings: »In any case, I want to have confidence in the domain of medicine, in all the little steps that happen, but one has somehow lost it. One gets more careful, I have to say. Beginning with the little things, with a stay at the hospital. If you are in several hospitals, you already see differences: how it works here, how it works there, there I’m much, much better, there they gave me this and that pill, here they actually talked to me and there nobody talked to me at all. Well, all this is varies a lot. Or this feeling – at the … cardiologist’s I wait for 3 hours, they give me an appointment at 3 p.m. and it’s my turn at 7 p.m. There I say to myself: hello, I’m not well, can I be the next one please? And then it’s the private patients’ turn before me, of course, I’m just – let me have it this way – an unglamorous health plan patient. You lose confidence at some point. […] that’s what I think. It’s just – well, real trust – I don’t know.« (patient interview)7

In analysing the issues of trust and expertise that are recurrent in our interviews and focus group discussions, some differentiations made by the sociologist Anthony Giddens might be helpful. For Giddens, modernity is generally characterised by all-encompassing abstract systems. These abstract systems emerge when social relations are moved from direct, local interactions of co-present actors to increasingly indirect, distanced, abstract interactions. Giddens terms this process the disembedding of social relations. One of the most powerful disembedding mechanisms in the development of modern institutions is the establishment of expert systems. These expert systems, according to Giddens, arrange technical accomplishments and professional expertise that in turn organise the »material and social environments in which we live today« (Giddens, Consequences, 27). And again Giddens:

7

This interview was conducted by Katrin Amelang in the context of the EU project (see footnote 1).

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»Most laypersons consult ›professionals‹ – lawyers, architects, doctors, and so forth – only in a periodic or irregular fashion. But the systems in which the knowledge of experts is integrated influence many aspects of what we do in a continuous way. Simply by sitting in my house, I am involved in an expert system, or a series of such systems, in which I place my reliance. I have no particular fear in going upstairs in the dwelling, even though I know that in principle the structure might collapse. I know very little about the codes of knowledge used by the architect and the builder in the design and construction of the home, but I nonetheless have ›faith‹ in what they have done. My ›faith‹ is not so much in them, although I have to trust their competence, as in the authenticity of the expert knowledge which they apply« (Giddens 1990: 27f.)

Giddens’ differentiation of trust in the system and faith in the internal workings of expert systems provides a valuable insight because it affords a perspective on power and knowledge that is highly relevant for the patients’ perspectives of the medical system. For Giddens, the prime condition for trust is the inescapable lack of full information; accordingly all trust in expert systems is necessarily blind trust. This trust derives from faith in the reliability of principles, procedures and self-control mechanisms applied in expert systems of which the trusting person in general is ignorant. »In conditions of modernity, attitudes of trust towards abstract systems are usually routinely incorporated into the continuity of day-to-day activities and are to a large extent enforced by the intrinsic circumstances of daily life. Thus trust is […] a tacit acceptance of circumstances in which other alternatives are largely foreclosed.« (Giddens 1990: 90)

As our interviews and the focus group discussions make clear, while valuing science as a truth-producing expert system and a herald of progress, the nuanced opinions of our respondents have two sources. Firstly, the faith in the correctness of procedures and the application of knowledge is often challenged at the »access points« of the medical system, where our respondents interacted with concrete physicians or were ›consuming‹ health care. These are reactions to perceived malpractice or unresponsiveness on the part of physicians. But there are also effects of close encounters with science as a system of multiple, competing and even conflicting knowledges. As in the case of

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the cardiomyopathy patient, science is revealed as an exercise in generalised scepticism of its own products – and this is the second, more fundamental source of uncertainty.

E x p e r i e n c i n g / K n ow i n g – I n t e r s e c t i o n s a n d z o n e s o f aw kw a r d e n g a g e m e n t In response to this twofold lack of confidence brought about by close encounters with the medical system, many of our respondents seek the help of patient groups. There they are looking for a special type of experiential knowledge that medical professionals – as they perceive it – are not able to provide. The statement of a male focus-group discussant from Germany, who received a heart-transplant four years ago, is an exemplary case; he describes how he hunted for information after the physicians of the Berlin Heart Center had put him on the transplant waiting list: »the doctors are the specialists, right, but they just don’t have the time to talk to you for hours on end. And above all, they haven’t experienced [a heart transplantation] themselves. So there … was this [names an association of organ transplant recipients] and I went [to one of] the regular meetings. So there I went, met the colleague [… and he] told me everything. He even came to my house to see me there. And ever since it has been much more easy for me. Enormously easy, you know. I received a lot of support there.« (focus group discussion8)

In their analysis of the Association Française Contre les Myopathies (AMF), Vololona Rabeharisoa and Michel Callon (2004) describe two crucial functions of patient groups: they serve as devices for – as they call it – the »primitive accumulation of knowledge« and as sites for »mutual learning«: experienced patients not only give emotional support and basic information to fellow sufferers, they also accumulate knowledge, for example about individual reactions to treatments, about side-effects or firsthand data about the course of diseases. Because many of these patient-groups are devoted to rare diseases of which clinical 8

This focus group discussion was facilitated by Silke Schicktanz in Berlin (see footnote 1).

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medicine – not only because of the small patient numbers – has no sufficient knowledge, patients and their associations are likely to collect data that has the potential »to enhance the efficiency of medical services. […] patients and their association[s] are the origin of numerous documents on the effects of drugs, and readily discuss such issues with specialists« (ibid., p. 147f), often as equals. A similar success story can be told of the German Retinitis Pigmentosa Society, founded in the late 1970s, which – like the AMF – managed to organise dispersed and fragmented research efforts in different disciplines and locations to serve their purposes. Besides collecting funds for research grants, the Society also influenced research through organising patients and making them »accessible« for researchers – by distributing questionnaires among its members or even by organised donations of tissue-samples with which to experiment (Gizycki 1987). More examples could be added, such as the impact of ACT UP, the US-American AIDS Coalition to Unleash Power, on AIDS research and treatment (Epstein 1996), or the US-American National Marfan Foundation that chose to pursue more »modest interventions« into research decisions (Heath 1997). In front of the backdrop of these success stories, not only limited to industrialised countries, it comes as no surprise that neo-liberal health care policy makers found the figure of the expert patient to be an ideal actor: he or she accumulates valuable knowledge in support of better science, is actively involved in his or her treatment, provides support to other sufferers, and can be enrolled in enhancing the accountability of the health system through a critical evaluation of the services offered to him.9 As a recent Canadian study on citizen-participation in health care argues, this new role attributed to the expert patient also reflects a growing recognition on the part of policy makers »that many decisions in health care involve both clinical and value choices« (Department of Health 2001). This expert patient not only reduces ›value deficits‹ (and will probably make ethicists expendable) but it is also lauded – for example – by the 9

However, there is little known about the actual functioning of many patient groups, their inner workings on a membership level etc. (Brown 1999).

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UK Department of Health as a key figure for chronic disease management in the 21st century, because his or her truly governmentalised mind-set promises better compliance and fewer expenditures for under-funded health care systems.10 It seems only a question of time until the rhetoric of the expert patient, the drafted Charters or the pilot projects will eventually materialise in more formalised participatory institutions. So is democracy progressing? Probably. However, there are some open questions, for example: what politics of knowledge are set into motion in these initiatives? Which assumptions about the epistemic status of the knowledge accumulated by patients dominate these policy papers that try to restructure the interzone between science/medicine and the »public«? How are medicine and the patient redefined in this interzonal traffic in knowledge, care, pharmaceutical substances and the like? Whereas Vololona Rabeharisoa and Michel Callon might envision a growing interpenetration, if not integration, of knowledge practices along an epistemic continuum, British ethicist David Badcott insists on a clear demarcation line between science and the life-world and cautions against confusing experience with expertise. As he sees it, individual patients might possess considerable experience about living with their disease, but experience – to quote Badcott – is »limited to an individual [and] does not of itself give rise to generalizations that underlie reliable clinical treatment« (Badcott 2005) and research. This firm separation between science, producing reliable truths and certified expertise on the one hand and lay experience on the other indeed dominates most policy papers suggesting an increased involvement of patients into decision processes about health care delivery or research strategies. While these policies clearly react to long-standing criticisms – not seldom to those of »medicalisation« – and perceived accountability problems of medicine, these initiatives are driven by an additive model of knowledge accumulation. Science is allowed to be unchanged and objective while the patients add the »human element« – insights into suffering, what it means to 10 Along the same lines, the German Ministry of Health’s initiative »Patient als Partner« envisions the enlightened patient as the ideal customer of health care provision (Mißlbeck; Ross 2005).

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manage a chronic disease on an everyday basis, how to cope with stigmatisation or how to cope with conflicting values. I have two objections against Badcotts conceptual separation of expertise and experience, and I do not think that the additive model of knowledge »extension« that rests on this presumption helps. First objection: Badcott idealises science as producer of objective truths and he misconceptualises experience as not affording generalisations and refinement. Second objection: For Badcott and many of the authors of the mentioned policy papers, the patient is foremost an individual who experiences his disease in a radically subjective mode. The patient is rarely conceptualised as a socially embedded actor who is also involved in distributed cognitive processes, in reflection and mutual learning. For both objections I take my lead from John Dewey’s concept of experience. Dewey argues that our current notion of experience was shaped by three historic episodes that defined experience in relation to reason. In classical Greek thought, experience means »the preservation, through memory, of the net result of a multiplicity of particular doings and sufferings; a preservation that affords positive skill in maintaining further practice, and promise of success in new emergencies.« (Dewey 1997: 199) While there is »some knowledge of materials, methods, and aims […] the marks of its passive, habitual origin are indelibly stamped upon it […] it can never aspire beyond opinion.« As such, experience contrasts sharply with true, universal knowledge. Experience »has to do with production« it deals with »generation, becoming, not with finality« (Dewey 1997: 200). The second historical episode that shaped notions of experience centers around the controversies between empiricist and rationalist theories of the origin and validation of scientific knowledge. Experience here comes to mean – in the words of Charles Sanders Pierce – »that which is forced upon a man’s recognition will-he, nill-he, and shapes his thoughts to something quite different from what they naturally would have taken« (Peirce 1997: 150). However, mere perception does not guarantee scientific knowledge, instead, the data of perception have to undergo a qualitative transformation, namely a generalisation and idealisation. The third episode problematises experience as the outcome of »subjective sensations and ideas«. Against this subjectivistic experientialism, Dewey stresses that

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any experience »always carries with it and within it certain systematised arrangements, certain classifications« (Dewey 1997:208), and »[s]ocial institutions, established political customs, effect and perpetuate modes of […] perception that compel a certain grouping of objects, elements and values« (Dewey 1997: 209). In short, Dewey suggests something very similar to Ludwig Felck’s concept of »styles of thought« (Fleck 1980): what might be termed Dewey’s »styles of experience« are bound to »communities of practice« (Lave and Wenger 1991) and these socially ordered experiences afford reflective thought that transcends its experiential basis. What is obvious is that this conception is a far cry from the above-mentioned clear-cut distinction that demarcates scientific fact from subjective experience. The objects of different styles of experience are like objects of one style of thought that are at least partially translatable into another style of thought. Of course, this would presuppose that scientific practices are conceptualised as nothing more than dependent upon a specific style of experience. The problem, then, is not so much the confusion of science and non-science, but rather that the reflective potential of everyday experience is not acknowledged. However, an even greater problem emerges when experience is used as a resource for identity politics that creates a very peculiar relationship between experience, culture, collective identity, politics, and power (Bernstein 2005). The danger that patient movements might run into is that in using »reverse affirmations« (Foucault 1981) as a political strategy to gain access to political processes, namely to use experiences of stigmatisation or exclusion based on deviant bodies, they translate experience in an unreflective, essentialist way into a means of group-formation. This essentialist trap is the dark side of the often celebrated »biosociality«, for example in the form of »genetic citizenship« (Jennings 2003), a participation entitled by biological substance. In these cases, the unintended consequence of participatory politics might be that the reflective potential of experience is likely to be bypassed. It is somewhat reassuring that many of our respondents see using their their bodies as authenticating devices for political or social action as an inevitable necessity – as a sort of walking proof. A representative example of how patients attempt to in-

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vest their experience in the context of health promotion comes from an interview conducted with a 19-year old Cypriot woman who successfully received a bone-marrow transplant: »Since I was cured, I wanted to learn more about [the disease]. Two weeks ago there was a blood donation in school. A physician came and talked about donation and when he finished I spoke to the [300] students […] and told them about my problem and urged them to donate blood because […]. I said ›I would like to talk to you. I am a living example and I needed blood many times. I never thought that I would need blood but I did. Perhaps you may need it in one month’s time, you cannot know what will happen‹. I think that I help with my way. I worked at the oncology department of the hospital within the context of a school working-week and I talked with many parents and they asked me many things.« (patient interview11)

What seems evident from empirical data like those quoted above is that the changes in the relationship between citizens and their states, that must simultaneously be considered to be symptoms and results of changing governmental regimes in late modernity, have – as has been already indicated in the introduction to this volume – the unintended but often welcomed effect of making health care practices and prevention regimes a little bit more reflexive. That patients and citizens actively transform themselves from objects to subjects of health promotion, that they volunteer to take on responsibility, that they organise patient groups and are even actively involved in systematic knowledge production, that they begin to see their experience in suffering and pain as a valuable resource for others, might be seen as hopeful proof for widespread altruistic leanings and social coherence. The downside, however, is that the increasingly dismantled welfare states and their biomedical systems count on the volunteer work of their citizens »to fill the gap« between health care and health promotion on the one hand and those who need knowledge and care on the other: A new type of middle-man citizen is emerging – a knowledgeable, self-educated go-between who connects expert regimes of abstract (biomedical) knowledge with non-experts and their need 11 This interview was conducted in Nicosia by Costas Constatinou (see footnote 1).

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for substantiated, concrete know-how, in other words, what diseases mean in everyday life. Of course, it is open for debate whether these investments of experiential knowledge, provided by patients and self-trained citizen-experts, their relatives and other concerned people, are ever successfully translated into biomedical assemblages: do they ever achieve a sustained transformation of health care provision and a significant change in the attitudes, styles of thought and practices of health experts, or do they remain a welcome but marginal add-on from the perspective of biomedicine?

References Badcott, David (2005). »The expert patient: Valid recognition or false hope« Medicine, Health Care and Philosophy 8(2): 173-178. Beck, Stefan and Jörg Niewöhner (2006). »Somatographic investigations across levels of complexity« Journal of BioSocieties 1(2): 219-227. Benton, Ted (2005). Biology and Social Science. Why the return of the repressed should be given a (cautious) welcome. Nature. Criticl Concepts in the Social Siences. John Bone David Inglis, Rhoda Wilkie. London and New York, Routledge. IV. Bernstein, Mary (2005). »Identity politics« Annual Review of Sociology 31: 47–74. Biernacki, Edmund: (2000). Zasady Poznania Lekarskiego (The principles of medical knowledge) quoted in Löwy, Ilana: Trustworthy Knowledge and Desperate Patients. Living and Working with the new medical technologies. Intersections of inquiry. Margaret Lock, Allan Young and Alberto Cambrosio. Cambridge, Cambridge University Press: 49-81. Brown, Ian (1999). »Patient participation groups in general practice in the National Health Service« Health Expectations 3 No.3: 169-178. Charlesworth, Simon J., Paul Gilfillan and Richard Wilkonson (2004). »Living inferiority« British Medical Bullettin 69: 49-60. Circulaire ministérielle n° 95-22 du 6 mai 1995 (1995). Charte du patient hospitalisé. Clarke, Adele E., Janet K. Shim, Laura Mamo, Jennifer R. Fosket and Jennifer R. Fishman (2003). »Biomedicalization: Techno-

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CONTRIBUTORS

Stefan Beck is Professor for European Ethnology at Humboldt University at Berlin. He has conducted fieldwork in Cyprus and Germany focussing on genetic screenings, organ donation and the social history of public health programmes. His work concentrates on knowledge practices in biomedicine, their social and cultural implementation, and their impact on notions of health, body, and shifting configurations of solidarity and moral practices. Isabel Fletcher is a PhD student in Science and Technology Studies at the Science Studies Unit, University of Edinburgh. Her PhD project is provisionally titled »Obesity: the social construction of an epidemic«. Wider research interests include the history of public health and epidemiology (focusing on cardiovascular disease), the history of nutrition science, the sociology of food and drink and the development of health policy. Marli Huijer is Civis Mundi Professor in Philosophy of Culture, Politics and Religion, Erasmus University Rotterdam, and Associate Professor in Philosophy, Time and Professional Practices at The Hague University of Applied Sciences (The Netherlands). She studied medicine and philosophy and received her PhD in philosophy of medicine. From 2002 to 2005, she was appointed Opzij-professor at the University Maastricht (alternating chair) – with special attention to gender and genomics. The focus of her current work is on time, (biomedical) technologies and culture. Yvonne J.F.M Jansen is cultural anthropologist and researcher at The Netherlands Organisation for Applied Scientific Research TNO Quality of Life, where she focuses on innovations in care and the formation and optimalisation of

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networks in care. She formerly was appointed as a PhD student at the Institute of Health Policy and Management of the Erasmus University Medical Center in Rotterdam, where she conducted her PhD research which comprised notions from Science and Technology Studies (STS). Petra Jonvallen is assistant professor in Gender and Technology at Luleå University of Technology, Sweden. Her research interest is in how medical technologies and medical knowledge are used and integrated into local practices imbued as they are with social, economic and epistemological differences. She has done ethnographic research on practices of pharmaceutical clinical trials and is currently studying fetal monitoring in birthing practices. Tom Mathar is a PhD-student in the Research Cluster »Preventive Self« based at the Department of European Ethnology at Humboldt University in Berlin. His research interests lie in the field of social anthropology and Science & Technology Studies including telemedicine and telecare, health policy and politics, innovation in health science and technology. He teaches »Health & Social Policy« at HFH-Hamburg (University of Applied Sciences). Tiago Moreira is lecturer in Sociology at Durham University, teaching sociology of medicine and in the area of science, technology and society. In his research, he is concerned with the collective production of health care standards, the politics of health care priority setting, the politics and policy of ageing research and the history of biology of ageing. Katia Dupret Søndergaard is a PhD. Fellow at the Danish University school of Education, Aarhus University. Her thesis dissertation is a micro-sociological study on how changes in adult psychiatric care are configured. She does that from a STS theoretical perspective and discusses how certain practice configurations help explaining survival or failure of new practices. She has written on the deinstitutionalisation process within mental health care and her research interests are centred on changes in organisations, and professional identities.

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