New territories in health 9781786305206, 1786305208

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New Territories in Health

Health Information Set coordinated by Viviane Clavier and Céline Paganelli

Volume 3

New Territories in Health

Edited by

Isabelle Pailliart

First published 2020 in Great Britain and the United States by ISTE Ltd and John Wiley & Sons, Inc.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms and licenses issued by the CLA. Enquiries concerning reproduction outside these terms should be sent to the publishers at the undermentioned address: ISTE Ltd 27-37 St George’s Road London SW19 4EU UK

John Wiley & Sons, Inc. 111 River Street Hoboken, NJ 07030 USA

www.iste.co.uk

www.wiley.com

© ISTE Ltd 2020 The rights of Isabelle Pailliart to be identified as the author of this work have been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. Library of Congress Control Number: 2019953654 British Library Cataloguing-in-Publication Data A CIP record for this book is available from the British Library ISBN 978-1-78630-520-6

Contents

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Isabelle PAILLIART

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Chapter 1. In a One Health Perspective . . . . . . . . . . . . . . . . Jocelyne ARQUEMBOURG

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1.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1.1. Institutional division, splitting up the problem and sectional containment . . . . . . . . . . . . . . . . . . . . . . . 1.1.2. Sectional ownership strategies and power struggles 1.2. Food links between animal and human health . . . . . . 1.2.1. Publicizing the links between animal and human health through food . . . . . . . . . . . . . . . . . . . . 1.2.2. Globalization of a major threat and the role of international agencies . . . . . . . . . . . . . . . . 1.3. The One Health concept and the institution of antimicrobial resistance as a boundary object . . . . . . . . . 1.3.1. One Health, from concept to buzzword . . . . . . . . 1.3.2. The emergence of new actors . . . . . . . . . . . . . . 1.4. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 2. “Our Health in Danger.” The Extension of Sanitization through Media Coverage of Health Alerts. Que Choisir, 60 millions de consommateurs, 2008–2018 . . . Benoit LAFON 2.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Analyzing the consumer press to understand the new health territories . . . . . . . . . . . . . . . . . . . . . . . . . 2.2.1. Consumer and health press . . . . . . . . . . . . . . . . . . . 2.2.2. Analyzing health-oriented coverage to reveal the sanitarization of consumption . . . . . . . . . . . . . . . . . . . 2.3. Sanitarization of revealed consumption: diversification and growth of “health” themes in consumer information . . . . . . . . 2.4. From risk to involvement through health warnings: analysis of framings and points of view of consumer health information . . . . . . . . . . . . . . . . . . . . . . . 2.4.1. Differentiated framings focused on health risks . . . . . . 2.4.2. From advice to warnings: the construction of points of view . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4.3. Mechanics of media-based health alerts: consumer involvement and empowerment . . . . . . . . . . . . . 2.5. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.7. Appendices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 3. Communication and Environmental Health in Critical American Approaches . . . . . . . . . . . . . . . . . . . . . Brigitte JUANALS

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3.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2. Critical orientation publications: marginal political approaches and questions in post-positivist work . . . . . . . . . . . . . . . . . . . . 3.3. A specific corpus-building process to identify publications of critical orientation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4. Publishers and journals of critical research articles dealing with communication on environmental health topics . . . . . . . . . . 3.5. Analysis of critical research articles dealing with communication on environmental health topics . . . . . . . . . . . . . 3.5.1. Categorization of the corpus by six thematic and methodological areas . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5.2. Affirmation of a critical approach in theoretical and methodological frameworks . . . . . . . . . . . . . . . . . . . . . . . . 3.6. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 4. Health, Environment and Nuclear Energy: Temporalities and Trajectories of Collective Mobilizations . Mikaël CHAMBRU 4.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2. From compromise confined to its conflicting publicity. . . . . 4.3. Problematization and (re)appropriation of the public problem 4.4. Affirmation of problematization and displacement of collective action . . . . . . . . . . . . . . . . . . . . . 4.5. Definitional issues linked to advertising and oppositional dynamics . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 5. Public Health Controversies: The Scattering of Arenas and Politicization. The Case of Vaccination in France during the 2010s . . . . . . . . . . . . . . . . . . . . . . . . . Caroline OLLIVIER-YANIV 5.1. Introduction: vaccination and the politicization of public health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2. Anamnesis of vaccine controversies: a question of arenas . 5.3. Scattering of controversies in arenas, an operator of politicization. . . . . . . . . . . . . . . . . . . . . . . 5.4. Scattering-selection of controversies in a plurality of arenas: proposal for an understanding of the politicization of controversies . . . . . . . . . . . . . . . . . . . . . 5.5. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 6. Internet User-Patient(s), a Collective Adventure . Cécile MÉADEL

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6.1. Introduction . . . . . . . . . . . . . . . . . . . 6.2. From rarity to effervescence . . . . . . . . 6.3. Polyphonic formats . . . . . . . . . . . . . . 6.4. The bubbling of exchanges . . . . . . . . . 6.5. The quest for information . . . . . . . . . . 6.6. Medical anxieties . . . . . . . . . . . . . . . 6.7. From information to empowerment . . . . 6.8. The patient facing the flow: A collective 6.9. Layperson production . . . . . . . . . . . . 6.10. Conclusion. . . . . . . . . . . . . . . . . . . 6.11. References . . . . . . . . . . . . . . . . . . .

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Chapter 7. Interferences and Territorial Conflicts: The Case of the Electronic Medical Record . . . . . . . . . . . . . Roxana OLOGEANU-TADDEI and David MORQUIN 7.1. Introduction . . . . . . . . . 7.2. Theoretical framework . . 7.3. Case study . . . . . . . . . . 7.3.1. Context . . . . . . . . . 7.3.2. Methodology. . . . . . 7.3.3. Case study situations . 7.4. Discussion . . . . . . . . . . 7.5. Conclusion . . . . . . . . . 7.6. References. . . . . . . . . .

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Chapter 8. Professional Practices and Organizational Issues. The Case of Medical Regulating Assistants . . . . . . . Aurélia LAMY, Céline MATUSZAK, Eric KERGOSIEN, Natalia GRABAR and Pierre VALETTE 8.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.2. The medical regulation file at the heart of the service’s activities . . . . . . . . . . . . . . . . . . . . . . . . . 8.2.1. Summarizing information without distortion . . . . . . . 8.2.2. Beyond input: Relational work . . . . . . . . . . . . . . . . 8.2.3. A mediation system that participates in the definition of a place report . . . . . . . . . . . . . . . . . . . 8.3. Around the DRM (regulation file): Multiactivity at the service of efficient patient care . . . . . . . . . . . . . . . . . . . 8.3.1. At the individual level . . . . . . . . . . . . . . . . . . . . . . 8.3.2. At the collective level . . . . . . . . . . . . . . . . . . . . . . 8.3.3. Between personal involvement and collective activities: The development of the proper role in the handling of the regulation file . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.4. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.5. References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 9. The Moral Economy of the Health “Territories.” Technocratization from the Top-Down of Biopolitics, Politicization from the Bottom-Up of Life Policies . . . . . . . . Frédéric PIERRU 9.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.2. The system and the territory against the local. . . . . . . . . . . . 9.3. A new technocratic boundary: Escaping politics . . . . . . . . . .

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9.4. Centralization, verticalization, and integration of sectoral government . . . . . . . . . . . . . . . . . . . . . . . 9.5. 2009: The final fight? . . . . . . . . . . . . . . . . . . . . 9.6. An evanescent territorial health state . . . . . . . . . . . 9.7. Technocratic “boundaries” facing the anarchy of life . 9.8. References. . . . . . . . . . . . . . . . . . . . . . . . . . . .

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List of Authors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Preface

This book is the third in a set entitled “Health Information” edited by Céline Paganelli and Viviane Clavier. This series is part of the “Health Engineering and Society” collection proposed by Bruno Salgues. Each book is the subject of a specific editorial project designed in close collaboration with the series editors. This book focuses on a specific territorial issue in the field of health. It proposes nine contributions that approach, based on the analysis of stakeholder logic, the relationships between health and territories. The authors, all specialists, propose original insights, nourished by in-depth studies, on the multiple forms that this territorialization takes: political and institutional, professional and organizational, public and media. I wish to thank Viviane Clavier for her trust, support and efficiency. Thanks are also due to Laure Sterchele for her editorial support.

Isabelle PAILLIART November 2019    

Introduction

The health sector is marked by strong divisions between structures that attribute to each of them “assignments to be found” in well-defined territories. The objective of the book is based on one observation: even if these assignments can be found in one or more institutional territories, a certain number of changes are to be noted. They are of three kinds: the first concerns the existence of a certain level of permeability between these territories, the second underlines the conquest by health of new social territories, and the third highlights the place of local territories within national health policies. Institutional health territories, social territories, and local territories thus determine the direction of the work. As we can see, the use of the term “territories” is broad and has a metaphorical dimension. The book deals with all these variations and considers that the territorial dimension, in its broadest sense, promotes a heuristic interpretation of the transformations underway. It is also a question of considering that the expression “new” territories underlines an interrogation on change in the health field much more than an affirmation on the “novelty” of situations. The book does not take into account all the actors involved in the field of health nor all the transformations underway; it focuses, for the most part, on the forms of advertising and media coverage, i.e., the relationship between this field and the public setting, through the media, digital devices, or information and communication activities.

                                        Introduction written by Isabelle PAILLIART.

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Institutional territories: Compartmentalization and movement This approach is illustrated by the chapter on antibiotic resistance. This phenomenon is at the crossroads of several territories: political, physical, and scientific. More precisely, Jocelyne Arquembourg identifies the trajectories of the problem of antibiotic resistance in bacteria. Scientists and doctors have begun to raise questions about antibiotic resistance, and in this context, the problem is confined to the medical and scientific sphere. At first, it was not considered, in France, as a risk for public authorities, unlike other countries such as Great Britain or Denmark. Gradually, and under the influence of new actors such as consumer associations, the media, politicians, and scientific actors, the issue of antibiotic resistance is emerging in the public space. But the originality of this notion is of several kinds. First, it challenges the boundaries between the territories of human and animal health since scientific research links meat consumption to the emergence of antibiotic resistance in humans. Second, the territorial scales of public action (European and national) are also mobilized in various ways; the response must be global and not fragmented into local actions. Finally, several agencies are involved in launching action plans with the objective of internationalized governance, even if these international bodies remain strongly dominated by the United States and Europe. All these elements lead Arquembourg to consider antimicrobial resistance as a “boundary object,” which is illustrated by the expression “One Health” and whose institutional implementations lead to a necessary reconfiguration of the fields of intervention of traditional actors. Approaching the issue of antibiotic resistance requires the participation of several actors and the complementarity of skills, so it is indeed a “boundary object” that is at the center of confrontations and power relations. Initially a human and animal health problem confined to the medical sphere, antimicrobial resistance has been discussed by other fields and with other types of actors, addressing new problems, making its emergence in the public sphere more complex but above all too broad. As we can see, health is at the heart of many scientific and political strategies. It is also a field that tends to conquer new territories of social activity. In this respect, it is not only a revealing but also a driving force for social change. In short, it extends its interpretation of social relations to situations that go beyond its usual scope, a movement reflected in the expression “social sanitarization” and demonstrated by the information published by consumer associations. In the “consumer press,” the presentation of products is studied in several aspects (quality, cost,

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efficiency, etc.), and in particular the risks to consumer health are highlighted. It is thus the “sanitarization” of consumption process that is being studied by Benoit Lafon. Consumer information magazines contribute to the emergence of problems in the public sphere, particularly in the field of public health. Work on the construction of public problems has highlighted the importance of their role, for example, as a contribution to the construction of the asbestos problem in the public sphere; and also by revealing the underlying socioeconomic issues. The reference to health in the “conso-info” (consumer information) is made in two ways: either it concerns health issues (hospitals, mutual health insurance) or it serves as a reference to broad issues (food, cleaning products). Benoit Lafon thus underlines a double movement, that of health toward consumption and that of everyday practices as seen through the prism of health. This is what he calls the sanitarization of consumption and the consumerization of health. Thus, we can note the interdependence and interpenetration of several fields, a situation that challenges public policies whose sectoral organization is not appropriate to these developments. The growing sanitarization is amplified by the almost systematic use, in the magazines studied, of “health warnings,” i.e., regular warnings about dangers that contribute to the translation of a situation into a health problem. Certainly, this journalistic approach corresponds to a strategy of conquering the readership through the involvement of the public. But the extension of the health territory to any activity or product, in the form of a media warning, does not seem to promote social involvement and collective awareness but rather, here as in other areas, it seems to accentuate the empowerment of individuals and the individualization of the problem. The territory: The challenge of a public health space The approach to environmental risks in terms of health and public health is treated here from a critical scientific perspective, identifying the political and economic stakes of power. In this field, it is dominant in France. This is not the case in the United States, as Brigitte Juanals points out in her chapter, which makes a definite contribution to the knowledge of North American work; scientific work that is part of a critical approach is in the minority compared to functionalist and post-positivist approaches. These approaches are characterized by the fact that they relate the social conditions of individuals, places, and their state of health. In France, the issue of inequality in care is social and territorial or at least the difficulties of access

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to care, if they manifest themselves in territorial inequalities, are social. American research adds an element that is not present in France, namely, the consideration of specific populations such as “racial and ethnic minorities.” Thus, the relationships between the location of individuals, “racial” criteria, the socioeconomic conditions of the inhabitants and their state of health are highlighted. The aim is to prove the profoundly unequal dimension of environmental health: the place devoted to power relations, modes of domination, and control and opposition movements is therefore decisive. The critical dimension of American work is in the minority and is marked by a weakness in data production, as researchers do not sufficiently develop empirical work. Thus, the lack of accurate and quantifiable data is an obstacle to policy makers taking these issues into account. In addition, the engagement of researchers undermines the credibility of their results and approach. Juanals’ research points out that critical American research highlights ethical issues, and sociohistorical analyses to highlight the poor monitoring of demographic transformations, for example, in the context of high-risk industrial sites. It indicates the presence of specific themes: “environmental justice” in particular, or “environmental governance,” which play a decisive role in the politicization of environmental health and its inclusion in the public space. In France, the situation is different; it is the controversies on environmental health that help embed this notion in the public space. Moreover anti-nuclear movements very early on used the health argument for opposition to the nuclear industry, as shown in Mikaël Chambru’s chapter. Environmental health in anti-nuclear mobilizations is a regular reference and the researcher proposes to establish a genealogical presentation. The result shows that the public emergence of a problem does not follow a linearity that would lead to its progressive structuring; there are public times and periods of invisibility. In public, environmental health is being promoted to fight nuclear power, and this requires the support of scientists and their production of knowledge. However, like with the opposition to vaccination, the words of scientists seem to have little resonance. For different reasons: in the context of vaccination, scientists are refusing to engage in public discussion; in the context of anti-nuclear movements, their expertise leads to obscuring social movements and putting in difficulty the expertise produced by militants. The place taken by scientists leads to a loss of activist expertise and their place in the struggle for strategies; in short, it externalizes a key element of the anti-nuclear fight into the scientific field. Hence, the importance of the definitional struggle to characterize the problem arises. But there are also times when environmental health becomes secondary in the strategies of collective mobilization and in

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the public space. It is then necessary to identify the conditions for reactivating these arguments and to analyze, through them, the power relations between three types of arenas: institutional, media, and oppositional. The article also highlights the difficulty that activists face in agreeing on a definition of a public problem. The reference to health issues in the defense of the environment is not always shared by the various opposing sensibilities to nuclear policy. However, the author notes that the plasticity of the reference to health and environmental risks, as well as the vagueness in the strategies, offer an opportunity to find new audiences and enrich the protest movement with other themes: occupational health, the transport of radioactive materials, populations in the vicinity of nuclear tests, etc. This raises a question about the ability of protest movements to break away from their usual repertoires of action and to make new demands that could make them visible in the public space and increase public support. Health: A new political territory The approach developed in the book is less concerned with the progressive debating of a health issue and the actors who contribute to its problematization than with studying the “circulation” of this theme within various social fields. Thus, controversies over vaccination are indicative of the politicization of the subject and, more broadly, the politicization of health issues. In short, it is a question of approaching the new territories of health politicization in this way. The theme of immunization is particularly rich in capturing the relationships and tensions between institutional discourses to promote immunization and those that are in opposition to it. The institutional dimension is particularly important: it gives rise to public policy, funding, specific actions, public communication campaigns, and assessments. It is, moreover, old. Caroline Ollivier-Yaniv identifies different types of controversies on vaccination, but above all, she highlights the arenas in which these controversies develop. The term “arena,” a spatial metaphor like that of “public space,” is chosen because it highlights the question of inequalities of access to discussion, their closure, and the transversal modalities of passage or interarena dynamics. There are three types of arenas: discrete or invisible institutional arenas that are part of the scientific field, economic actors, and public institutions; institutionalized public arenas that correspond to the information media; and deregulated semipublic arenas that correspond to digital arenas. These three arenas raise several questions: about their access, about the actors who comprise them and their power relations, and finally about the discourses of the social actors. But the author

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shows that these arenas are not compartmentalized; she highlights the movement of a controversy from one arena to another and the fact that they interact with each other. As for the institutional actors, they seek to impose a rationality that is entirely scientific and political, proving to be evidence of a position of authority; in short, the rejection of the conflict leads to the reaction and politicization of the subject by other actors. Arenas are not equal among themselves, and the subject of vaccination shows, in a way, the alliance between open public arenas (media, associations). The dispersion of public arenas and their multiplication thus contribute to the politicization of the subject and to the questioning of traditional legitimacy on a scientific and political level. The new health territories not only refer to places or spaces undergoing transformation or on territorial scales; the expression also covers other changes: the emergence of new actors and patients who redistribute the relationships between doctors and patients, and the appearance of new situations that make institutional territories evolve. Concerning the patient, his or her role has evolved considerably within the singular colloquium, in particular because of greater accessibility to health information through the Internet. Cécile Méadel thus shows the importance taken by the consultation of sites, which leads to a loss of power by the medical and scientific institution which, until now, had a clear monopoly on medical information. These sites and applications are more focused on the patient than on the enhancement of the medical institution. Admittedly, this situation is linked to profitability objectives, and exchanges between patients, and comments or advice are the purpose of these different sites. The consequence of this presence or involvement of the patient in Internet exchanges is to extend health to new situations, those of daily concerns, in short to take health and health information out of its traditional isolation. At the same time, it is the relationship with health professionals that is changing. The chapter questions the fear that physicians may encounter in the face of this quest for information. More generally, the health sector is undergoing changes in other sectors: user participation, the questioning of established and imposed knowledge, as well as the progressive recognition of expertise through experience. However, the chapter also highlights the fact that, in his or her Internet practices, the patient is not alone; the collective dimension manifests itself in several ways in discussions and exchanges with other Internet users or in expressions of support. It is also manifested in the production of secular knowledge, in forms of expression and dissemination. The production of secular knowledge ranges from the simple transmission of information to the participation in scientific knowledge (e.g., through the establishment of

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databases). Thus, the collective dimension linked to the experience of the disease leads on the one hand to the emergence of diseases in the public space and to promote their recognition and to change the institutional territories of medicine on the other hand. Health: A space for confrontation between organizational territories The French emergency medical services (SAMU) illustrate the issues that arise in the field of health (and more particularly in the organization of medical care). The territorialization of medical activities thus acts as an indicator of new problems. An emergency service is territorial in a dualistic way: it is a physical space within a hospital center, and it is located in an urban space. Chapter 8 proposes to analyze the functioning of a particular service: it is well known to the inhabitants and strongly identified, and at the same time it is marked by a certain opacity, and its functioning escapes external scrutiny and particularly that of callers. In an even more detailed way, the chapter focuses on professionals who interact strongly with callers and yet are not well known and poorly identified. Most often, it is the interactions between doctors and nurses that have been studied or the difficulties encountered by health professionals in their professional environments. Aurélia Lamy et al. are interested in professionals who are present among the public but who remain invisible. These are “medical regulatory assistants.” These actors play a mediating role between callers and doctors, who, although decisive, remain unknown and undervalued. The “info-communication” skills required are undervalued in relation to the command of technical skills, especially computer systems. In addition, these professionals must deal with a multitude of activities that require special reactivity skills. It is therefore through the role of “medical regulatory assistants” that an entire internal organization is questioned. Questioning of the functioning of a hospital structure is highlighted during the implementation of the Electronic Medical Record (EMR), a system designed to centralize and share patient information by healthcare professionals within an institution. The hospital presents itself as an organization with many services, part of different, highly structured “worlds” that could be quickly separated into two parts: on the one hand the clinical part, and the administrative part on the other. However, the implementation of EMR blurs and even challenges the spatial, professional, and symbolic boundaries between these services. Admittedly, the

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implementation of information systems within organizations and companies has highlighted how complex its integration is, in particular through the collection and sharing of data. The hospital institution’s bureaucratic dimension reinforces the difficulties that concern both the issues of power and the changes in professional practices. In this sense, Roxana OlogeanuTaddei’s chapter questions the notion of territory in its multiple meanings: it is an organizational territory (the hospital), the boundaries between services, and a reconfiguration of power spaces within a structure. The development of an EMR reveals several problems: the choice and selection of information, its access for health professionals, and the tensions between having managerial rationalization (invoicing rules) and professional rationalization (medical data). It then remains to identify which actor or mechanism can establish the link or bridge between territories that often coexist and oppose each other. Health: Between national policies and the territorialization of public action Finally, Frédéric Pierru’s chapter on national public policies and their relationship with local policies highlights the complexity of positioning. We should not interpret health policies dichotomously, whether they are territorialized (the action of the State in the territories) or territorial (the action of territorial authorities): the former imposing directives that the latter would be responsible for implementing, or, in an opposing interpretation, the latter being autonomous and in opposition to national structures. The sociologist clearly underlines that the territorialization of national health policies, as in other fields, is based on instruments (in particular those of new public management) and structures that frame and define health activities in the territories. And in this sector, economic rationality and the imposition of severe budgetary constraints are essential here as in other public services. More generally, the author highlights a form of depoliticization of health issues at the national level. The objective is to give way to a re-centralization of health policies accompanied and justified by their technocratization. As for the policies pursued by local and regional authorities, they are based on a twofold movement: competition between territorial levels (not only between municipalities, departments, and regions, but also between cities or between the city center and suburban cities) and that of interdependence between these levels. In short, local authorities must master the management of multilevel local interdependencies and ensure their coordination. They must also take into account a politicization of health issues for which they are

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relatively lacking: the demands of health personnel and in particular emergency services, territorial inequalities in access to care, dependency management, problems related to climate change such as episodes of pollution or heat waves, or the maintenance of small hospital structures. All these elements mean going beyond the verticality of State action and underlining that a certain number of new issues are being created from the territories, forcing a reconfiguration of health policies and, in general, that of the very notion of health. All the contributions in this book highlight an intertwining of the different territories: political and institutional, organizational and professional, public and media, and, increasingly, their interdependence.

 

1 In a One Health Perspective

1.1. Introduction Antimicrobial resistance is not an object but rather a biological phenomenon that refers to the resistance of bacteria to antibiotics. However, over time, it has become a social phenomenon and a public health problem in most European countries and in the United States – countries that have been highlighting the “global threat” since 2013 [ARQ 16]. Therefore, this public health problem can be considered to have all the characteristics of what Susan Leigh Star and Jim Greisemer [STA 89] call a “boundary object”. Through this notion, the authors wish to describe and characterise the process through which actors from different social worlds – called upon to cooperate – manage to coordinate with each other in spite of their differing points of view: how do they create common understanding without losing the diversity of their social worlds? Those involves in areas where knowledge is not yet stabilised come up against the need to reconcile different meanings given to objects upon which they are trying to reach agreement [TRO 09, p. 5]. Boundary objects are located at the crossroads of social worlds that connect with each other and communicate, making multiple translation efforts possible. Studies on boundary objects generally focus on the activities or interactions of the actors concerned. In the case of antibiotic resistance, it is important to focus more on the boundary object itself as the origin and consequence of such activities and interactions. Antimicrobial                                         Chapter written by Jocelyne ARQUEMBOURG.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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resistance is a global threat that makes it imperative for scientific and institutional actors to coordinate with each other appropriate responses. However, this object is not entirely pre-existing, and as we move forward, we will see that its definitions and interpretation frameworks evolve, expanding its own boundaries and thereby increasing the number of social worlds to which it belongs. While the authors who work on this notion frequently use the term “social worlds” to refer to social, professional and disciplinary universes that come into contact through a boundary object, we would prefer to talk here about territories. Antibiotic resistance is a matter for different territories, whether institutional (areas of intervention and places of power), scientific (disciplinary areas), geographical (countries) or economic (places of agricultural production, mass retailing, etc.). Our aim is thus to locate a boundary object at the heart of the different territories it concerns or crosses, and above all, to observe the mutual movements by which this object constitutes a form of formal notice to act for increasingly diverse actors – located in increasingly vast territories – who, in return, will shape this boundary object itself, its definition, and its interpretation frameworks. 1.1.1. Institutional division, sectional containment

splitting

up

the

problem

and

Bacterial resistance to antibiotics is a process that has been known for a long time, but which, at first, did not appear to be a major threat. Confidence in the ability of researchers, and pharmaceutical companies, to produce new antibiotics has long led to the belief that the discovery of new drugs would beat the ability of bacteria to adapt, without realizing that this race could generate new forms of adaptation in the bacteria [AND 16]. On the other hand, antimicrobial resistance remained a difficult phenomenon to observe [JEN 19] until effective monitoring systems were put in place, which, in France, was done in the 1990s [FOR 15]. Although the medical and veterinary professions were getting more concerned about antibiotic resistance, this anxiety led initially to action programs that took place in preexisting institutional frameworks. The media coverage of this issue in newspapers such as Le Monde reflects this situation. News related to antibiotic resistance usually appears in the science column and never usually under the society column or on the front page. This says a lot about the primary definition of the problem, long considered a scientific issue related to human health and the sole responsibility of scientific researchers and physicians. This first framework of interpretation was reinforced when in the

In a One Health Perspective

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1980s and 1990s, cases of mortality due to penicillin-resistant pneumococci in cities, and above all methicillin-resistant Staphylococcus aureus (MRSA) in hospitals, were reported. Consequently, in France, the first whistleblowers to be concerned about this problem were resuscitators [CRE 16]. The combination of syntagma-resistant bacteria and nosocomial diseases has helped to strengthen this first definition, even though in other European countries, such as the United Kingdom, Denmark and Sweden, the framework for interpreting the problem included other dimensions related to antibiotic consumption in livestock farms and food. In fact, for a long time, bacterial resistance to antibiotics appeared, first to scientists and then to stakeholders, as an addition of problems from different territories or environments. First, there are scientific reasons for this. Until the 1960s, scientists conceived that resistance was transmitted horizontally by contact. A first level of doubt was instilled by the discovery of plasmids – mobile genetic elements located outside the nucleus of the bacterial cell – by R.W. Hedges and A.E. Jacob, leading to the discovery that these plasmids could exchange resistance genes. As Tristan Berger [BER 16, p. 9] observes, The transmission of antimicrobial resistance [H] between bacteria can therefore be vertical and/or horizontal, the latter aggravating their multiplication. However, at the time, this development seemed to meet boundaries of territory, environments – hospital, rural, urban – and species: there was no evidence that there could be any links between antimicrobial resistance [H] and [A]. Therefore, while it is certain that the use of antibiotics in humans can accelerate the development of antibiotic resistance [H], the problem analyzed here – antibiotic resistance [A] – seemed a priori safe for human health. Thus, in France, responses to the increasingly blatant and threatening emergence of resistant bacteria were initially incorporated into a partition between human and animal health, and were not taking into account the role of the environment in the proliferation of the bacteria. With regard to these institutional and scientific territories, antimicrobial resistance has first been the subject of sectional containment, which has slowed its emergence as a social and public problem. However, this threat has, through its persistence and scale, played a revealing role, casting a stark light on the limits of these territories and their inability to solve individually a problem that overwhelmed them to the point of making their collaboration necessary.

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New Territories in Health

The first signs of trouble regarding antibiotic consumption in livestock farms appeared in the pages of Le Monde at the end of the 1960s, when articles began to question consumption of antibiotics in intensive livestock farming. The often-quoted risk concerned the supposed presence of antibiotic residues in food. At first, this anxiety proved vague and mixed up with other concerns. For the actors who gave it a certain degree of publicity, especially the scientific journalists at Le Monde, it was part of a broader debate opposing two conceptions of livestock, and then, a debate that combined all the treatments used in the context of modern agricultural practices, such as hormones, tranquilizers and anabolic steroids. The question of the use of antibiotics as growth promoters is sometimes raised in articles but seems to be part of debates that do not go beyond the scientific framework [ARQ 16]. Thus, it can be considered that in France, until the early 2000s, antimicrobial resistance was not considered a risk to both human and animal health. The issue did not receive any real recognition from public authorities, and in the case of animal health, did not stand out among a list of other significant problems affecting agricultural production methods. Notably, the situation is quite different in the United Kingdom and Denmark, where the link between the consumption of antibiotics on farms and the spread of bacteria resistant to equivalent molecules in humans has been widely publicized since the 1990s, leading Denmark to ban the agricultural use of vancomycin. Sweden, from the late 1980s, has already taken radical measures to ban the use of antibiotics as growth promoters, and to implement the use of veterinary prescriptions for both preventive and curative uses. On the other hand, in France, the major communication campaign to reduce antibiotic consumption in 2002, “Antibiotics are not automatic”, was followed in 2007 by another which only targeted human health. Antimicrobial resistance is treated in two different and parallel ways in two distinct territories that mutually reject its responsibility: human and animal health. The treatment also demonstrates great difficulty in totalizing an object of common interest that arouses a broad public mobilization. 1.1.2. Sectional ownership strategies and power struggles It is important to review the first health crises that triggered a rearticulation of human and animal health territories in the face of antimicrobial resistance. This re-articulation has taken different forms in different European countries.

In a One Health Perspective

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In 1960 in Great Britain, 60 people were contaminated by the consumption of raw milk from cows infected with resistant bacteria (Salmonella typhimurium). Very quickly, public opinion reactions pointed to the use of antibiotics as growth promoters in livestock farming. It was not until 1969 that the British government commissioned Meredith Michael Swann to produce a report on this issue. The report recognized the link between growth-enhancing antibiotics, the development of resistant bacteria, and the risk of contamination to humans through food. It advocated the prudent use of antibiotics and recommended that their delivery to farmers be subject to veterinary prescription. However, as Maryn Mckenna [MCK 17] observed, “So many prescriptions were being written that more antibiotics were used on British farms in the wake of the Swann Report than before.” Indeed, in two years, consumption rose from 41 to 80 tons. So much so that in 1980, The British Medical Journal accused the local and specialized press of encouraging farmers to obtain antibiotics from unofficial markets. A public arena then emerged around debates whose frameworks were very well described in the article by Carol Morris et al. [MOR 16]. The main stakeholders involved in the problem, whether associations, livestock breeders’ unions, veterinarians or institutional representatives, adopted one or the other of the three positions that structured the debate: denouncing the failure of a production system, maintaining and observing the status quo, or calling for a voluntary approach and responsible use of antibiotics. The debate then pitted two types of arguments against each other: on the one hand, a radical criticism of a system based not only on farmers’ practices but also on pressure from traders and consumers to consume ever-cheaper meat, and on the other hand, the other two categories of actors who were making human health responsible for antimicrobial resistance. This, however, resulted in three types of proposals: the first requesting government intervention to control antibiotic use in livestock farming, the second suggesting that the measures already in place were sufficient, and the third limiting a request for voluntary action backed by efforts to improve hygiene and biosecurity. These debates, which appeared in the general daily press and in the specialized press, shed light on the figures of antibiotic consumption on livestock in Great Britain. The same study on human health consumption would have certainly shown a high collective sensitivity to the risks of antibiotic resistance and a more widely shared desire to reduce consumption. But the fact that these debates were reported in the newspapers highlights the mobilization of associations and non-governmental actors.

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New Territories in Health

These first discussions took a new turn and, above all, became international, as seen across Europe, with the so-called avoparcin crisis that occurred at the end of the 1980s. In 1988, cases of patients infected with vancomycin-resistant bacteria (vancomycin-resistant enterococci, VRE) in France and England were reported, but the causes were not really established. However, in 1995, Danish farmers discovered the existence of VREs in poultry and pig farms, so the link was made between avoparcin, a vancomycin derivative used as a feed additive since 1976 to promote the growth of farm animals, and the resistance to vancomycin, a drug used in human medicine to treat golden staphylococci. This relationship was the subject of a report by the Danish Minister of Agriculture to the European Community, who denounced the relationship between VRE and the use of avoparcin in pig and poultry feed. Almost immediately, the Danish government banned the use of avoparcin in livestock farming. This was the beginning of a long process that led the European Community to ban avoparcin in 1997, in the name of a precautionary principle. But the issue raised by Denmark, and before it, Sweden, extended to all antibiotics used as growth promoters, so that gradually, the problem raised by the avoparcin crisis was requalified, embracing new objects and, above all, extending to all members of the European Community. Denmark banned the use of growth promoters in 1999, and this was followed in 2006 by a Europe-wide ban. It is interesting to situate the French position at the heart of these debates, which involved the articulation between human and animal health. First, the Commission interministérielle et interprofessionelle de l’alimentation animale, CIIAA (the French interministerial and interprofessional commission for animal feed) rejected the conclusions of the Danish report. One of its arguments was that it was mainly the use of vancomycin in curative medicine that caused glycopeptide-resistant enterococci (GRE) strains in hospitals, and that the origin of these GREs was the introduction of carrier individuals into the hospital. Notably, this first movement led to the re-territorialization of the problem, which was thus assigned to a place and a context. However, the French Ministry of Health opposed these conclusions and entrusted the matter to an expert body under its authority, the Conseil supérieur de l’hygiène publique de France (CSHPF), which took the opposite view to the previous report, not without conceding the absence of direct evidence. One of its arguments was to reverse the flagship argument of the CIIAA by calling for a reduction in antibiotic consumption in agriculture, equivalent to that initiated in hospitals. Finally, France voted to

In a One Health Perspective

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withdraw the use of avoparcin. As Michel Setbon [SET 04, p. 64] observed in his article on this subject: The construction of the problem is marked by the confrontation between two competing definitions. The first, led by the EC, which is supplied by its competent directorates, defines the problem as that of animal resistance induced by the VA before extending it to growth-promoting antibiotics with the same characteristics. The second, defended by SCAN1 at European level (and also by CIIAA in France), identifies the problem as the (causal) role of antibiotics used in animal feed in antibioticresistant human infections. The distance between them is both limited to one stage, the transition from animal to human resistance, but it is significant. From the way the French media covered these events, we see that a newspaper like Le Monde, for example, had never covered a health crisis nor publicized the discovery of the link between VREs and vancomycin. The only articles that addressed these issues between 1988 and 1997 did so in very general, even evasive terms: “Bacteria mutate to adapt to antibiotics” (June 1997), “Antibiotics used in animal husbandry have harmful consequences for humans” (March 8, 1997), and “Antibiotics used in factory farming could be banned” (November 14, 1998). The European decision came in a context where the severity of the situation was not well known and had not been debated. One thing is certain, however, that the questioning of the links between animal and human health confronted with antibiotic resistance led, first of all, to a mutual rejection of responsibilities, as acknowledged by a European Commission official, whose comments were reported by Michel Setbon [SET 04, p. 67]: “The veterinarians said that it was the doctors’ fault, the doctors that it was the veterinarians’ fault, the veterinarians that it was the additives’ fault: so we realized that we had to look at the problem as a whole.” However, looking at the problem as a whole also involved questioning the points of contact between human and animal health, starting with food.

                                        1 Scientific Committee for Animal Nutrition.

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New Territories in Health

1.2. Food links between animal and human health 1.2.1. Publicizing the links between animal and human health through food The issue of prion disease transmission through food was the subject of intense debate in the late 1990s, during the mad cow crisis. With the avoparcin crisis, we have seen that the issue of resistant bacteria in animals and humans has arisen, but with uneven intensity depending on the country. In fact, as early as 1975, the question of the link between antibiotic resistance and food was raised through a first framework of interpretation: the risk to human health from the consumption of antibiotic residues in food. This risk was put on the agenda of the public authorities by Professor Hugues Gounelle, member of the Conseil Supérieur d’Hygiène Publique, “Food” section. In response to his warnings, a law was enacted on May 29, 1975, that shared the sale of veterinary medicinal products between pharmacists and agricultural cooperatives for preventive medicinal products and veterinarians for curative medicinal products. In 1984, in the United States, initial scientific research demonstrated a link between the consumption of meat from antibiotics-administered animals and the emergence of bacterial resistance. In the French press, an article by Jean-Yves Nau echoed this new approach: American epidemiologists have, for the first time, established a direct link between the administration of antibiotics to animals and the appearance of human pathology due to resistant bacterial strains. Since contaminated meat is consumed – among other things – by patients on antibiotics, the resistant strain therefore had a “selective advantage” in the intestinal flora. It could develop at high speed, which explains the appearance of salmonellosis (Le Monde, July 1, 1985, “Les dangers de l’élevage d’animaux aux antibiotiques”). Nevertheless, these scientific findings began to quickly disappear from the national daily press. They only resurfaced in the debates and measures taken against the use of antibiotics as growth promoters in the aftermath of the avoparcin crisis. A second framework for interpreting the problem then appeared in the media and scientific discourse: the transmission of resistance genes to humans through the meat of animals that have received avoparcin treatments. In the meantime, advances in molecular genetics made it possible

In a One Health Perspective

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to develop this new approach to identify the links between animal health, food and infectious risks in humans. Food thus appeared as a vector of transmission between two territories that were not initially connected and whose porosities were being increasingly revealed by scientific research. In the years 2012–2013, the lack of “separation” between the territories of human and animal health left room for the consideration of inseparable links. It was during the following two years that these links appeared most clearly in the public arena, supported by scientists, consumer associations, the media and political leaders. This resulted in an expansion of the public arena through which the problem of antibiotic resistance was constituted. 1.2.2. Globalization of a major threat and the role of international agencies Previous observations indicate not only the fact that bacterial resistance to antibiotics knows no boundaries, but that it has been treated differently in different countries. However, the various action programs intended for rectifying it have had positive results because international agencies such as the WHO or the ECDC have placed antimicrobial resistance on their agendas. The desire to provide global response to a worldwide problem has made it possible to develop a different vision for this problem, which could no longer be the sole subject of a juxtaposition of local actions. Various action plans were developed by various national agencies, the WHO, the Food and Agriculture Organization (FAO) and the Office international des épizooties (OIE; now the Organisation mondiale de la santé animale) in May 2015. Other initiatives, joint actions, were launched by the European Union in 2001, 2011, and 2017. The Joint Action on Antimicrobial Resistance and Healthcare-Associated Infections is part of a global vision for the problem. In France, these approaches are reflected in the interministerial roadmap of November 2016, and the various Ecoantibio plans for the use of veterinary drugs. Consequently, it is no longer governments or local whistleblowers who refer cases to European authorities or major international agencies for the implementation of laws or public policies, as was still the case at the time of the avoparcin crisis. These same local actors are now responsible for implementing with their own resources the roadmaps decided at the level of international agencies or groups of agencies, of which they are also members. These roadmaps must respond or at least take into account certain incentives provided by international

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New Territories in Health

agencies. We are thus witnessing the implementation of a globalized governance of public health problems, which themselves have the intrinsic characteristic of not knowing boundaries. In the case of antibiotic resistance, this includes addressing the problem from a One Health perspective. However, it should be noted that the map of this re-territorialization of areas of intervention at the international level has many gray areas. Indeed, the agencies in question are all located in the United States or Europe, and even if they take into account the increasingly threatening proliferation of multiresistant bacteria in Africa and Asia, particularly in India or China, they rarely involve these countries as partners in the globalized governance of the problem. This situation may seem all the more paradoxical as the pharmaceutical industries have, for many years, relocated their antibiotic production plants to these countries, for example Brazil or India. 1.3. The One Health concept and the institution of antimicrobial resistance as a boundary object 1.3.1. One Health, from concept to buzzword The origin of the One Health concept must be understood from its scientific and epistemological roots, before examining its institutional developments. The concept was born from a desire to bring human and veterinary medicine closer together, which appeared between the 1960s and 1970s. This desire emanated from the work of C.W. Schwabe [SCH 04], who invented the concept of One Medicine, the aim of which was to foster collaboration to address ever-increasing threats to human health. The emergence, at the end of the 1980s, of several health crises attributable to “zoonotic infections” certainly led to the transition from the concept of One Medicine to that of One Health, which officially appeared in 2003. The SARS epidemic in the early 2000s was followed by the avian flu spread all over the world by the migratory birds. Zoonosis then came to be defined by the WHO as diseases or infections that can be transmitted from animals to humans. As Angela Cassidy observes, Such events refocused scientific and policy attention on the transmission of infectious diseases from animal to human populations. They also brought wider recognition of the problems posed by the traditional separation of human and animal health in science, policy and the professions, particularly when (as in the case of HPAI) they created “silos” that limited

In a One Health Perspective

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the ability to share knowledge or coordinate policy across international health organizations. This situation resulted in calls for more effective and integrated working across these domains2 [WOO 18, p. 195]. Notably, the most common uses of the term One Health suggest that it was probably in common use even before Schwabe employed it. On the other hand, the diversity of the term’s developments is noteworthy, as other actors, in specific contexts, have tried to change its definition. The first change came from the Wildlife Conservation Society, whose researchers drew attention to what they called “health ecosystems” and to the fact that these ecosystems could also be considered as sick or healthy patients. They thus broadened the notion of a single medicine inherited from Schwabe by introducing an additional actor: the environment. Simultaneously, they redirected the issue of the transmission of infections, which they believe are not only from animals to humans, but also from humans to animals and even between different animal species. They developed the idea that humans are part of interconnected networks of organisms that integrate wild animals, domestic animals and microorganisms. Another definition of the One Health concept was developed by Professor Jakob Zinsstag and a group of researchers from the Institut Suisse de Maladies Tropicales. They too sought to extend the scope of One Medicine, in particular by broadening the definition of health to include the consideration of well-being. In addition, they also promoted a systemic approach to health, including all forms of organizations, actions, practices or related activities. As Angela Cassidy points out, each of these definitions assigns a specific role to animals. While Schwabe’s definition is by far the most anthropocentric, it can be seen that this aspect is not absent from the concerns of J. Zinsstag and his colleagues. Both Schwabe and Zinsstag et al. are concerned about protecting human health, but the more systemic                                         2 Such events have refocused scientific and political attention on the transmission of infectious diseases from animals to humans. They have also given greater recognition to the problems posed by the traditional separation between human and animal health in science, policy, and professional practice, particularly when (as in the case of HPAI) they create “silos” that limit the ability to share knowledge or coordinate policy actions across international organizations. These situations lead to a need for more effective and integrated work between these fields.

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New Territories in Health

approach of the latter led them to consider animals as a source of food, work tools, companions and community members. The question of how humans and animals live together is therefore at the heart of their concerns. On the other hand, the Wildlife Conservation Society certainly has the broadest definition, because of its consideration of wild animals, and especially because it both broadens and opens up the object of medicine to that of ecosystems, beyond individuals. But the anthropocentrism that generally dominates the One Health approaches is not without contradictions. We cannot help but conclude with Angela Cassidy: While OH imagery demonstrates an additional objective of care for valued animals (livestock, pets and aesthetically pleasing charismatic wildlife), which it portrays in the roles of patients and subjects of human custodianship, this has yet to be realized substantially in scientific work that claims to pursue an OH approach. This situation indicates the peculiar contradictions at the heart of OH: a movement trying to bring together human and animal health does so by arguing – and working to ensure – that attending to animal health will benefit humans [WOO 18, p. 227]. However, it is mainly the institutional implementation of the One Health concept that had an impact on the reconfiguration of institutional health territories as areas where decisions and policies could be made. When in 2008, the three international agencies – the WHO, FAO and OIE – managed to produce a document drawing lessons from the avian influenza crisis, and pointed to the coordination and communication difficulties of organizations facing such an epidemic, they repeatedly referred to the One Health perspective to express their willingness to collaborate. This discourse then spread ceaselessly into the political and institutional sphere where it became what Cassidy described as a “buzzword”. “OH can therefore be viewed as an example of a newer form of scientific agenda-building, the ‘interdisciplinary bandwagon’, which works in concert with other agendas such as food security and translational medicine” [WOO 18, p. 212]. This success does not prevent us from expressing reservations about how to apply what was originally a concept to become a research perspective, and eventually to become a program. It is not surprising, under these conditions, that the fight against antibiotic resistance has gradually taken place from a One Health perspective. As of 2014, it has been on the agenda for collaboration between the WHO, FAO

In a One Health Perspective

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and OIE as one of the three priority topics. Simultaneously, in 2015, a new WHO action plan broadened the scope of the One Health concept to include, beyond human and animal medicine, agriculture, the financial sector, the environment and consumers. It must be noted that these different sectors also integrate precisely the chain of actors concerned with antimicrobial resistance. But what about their effective collaboration at a national level? A report submitted in 2015 by Dr. Jean Carlet [CAR 15, p. 3] to the French Ministry of Social Affairs, Health and Women’s Rights is openly part of a One Health perspective that “requires a continuum between fundamental, translational, clinical, epidemiological and public health research (including the economic dimension)”. This report led to the implementation of an interministerial roadmap, leading to the creation of a priority research program on antibiotic resistance. While the process has the merit of bringing together a significant number of researchers and research organizations concerned with the subject, it nevertheless raises a number of questions concerning the complexity of such a system, the production of programs that correspond more to a juxtaposition of disciplinary competencies than to real collaborations, competition between disciplines and the over-representation of the disciplines responsible for human health, and finally the governance model that seems to essentially rely on the Ministry of Health. 1.3.2. The emergence of new actors In terms of governance, the French institutional treatment of antibiotic resistance is schematically based on a top-down model in which responsibility for the measures to be taken, whether they concern research, monitoring, the implementation of “good practices”, and communication, rests with the government and with the ministerial bodies in charge of human health primarily and animal health secondarily, the environment being represented to a much lesser extent. These actions, which ultimately require the participation of citizens, or even, in the case of antibiotic resistance, genuine social mobilization, are designed through a top-down process that links experts to what is often referred to as “the general public”. Communication takes the form of a go-between, designed to change individual behavior from a behaviorist perspective that is not concerned with contexts, socio-economic and cultural conditions, stakeholder strategies, professional practices and collective organizational modes. This process also distinguishes France from other countries, such as Great Britain, where

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New Territories in Health

collective mobilization against antibiotic resistance is both more general and more long-standing, and the United States. Bacteria do not respect boundaries, and large agencies such as the WHO are trying to implement global governance of antimicrobial resistance. Therefore, it is worth considering these differences. The case of the United States in this respect is indicative. While concerns were emerging in the United States about the use of antibiotics in animal feed before the 1980s, they involved, as in Europe at the same time, the risk of antibiotic residues in human food. An episode of Salmonella Newport contamination in 1983 led a doctor, Dr. Scott Holmberg, to produce a report that traced the source of the contamination to a cattle farm and highlighted the complete chain of transmission of resistant bacteria between farm animals and humans. This study was repeated, addressed to the health administration, and widely disseminated by the NGO Natural Resources Defense Council (NRDC), which in this case acted not only as a whistleblower, but also as an intermediary between scientists and the government administration. As Estera Badau observes in her thesis on this subject: “If until then, the issue was locked up at institutional level in a debate between administrative bodies arguing over the legitimacy of defining the problem and finding a solution, the petition sent by the Natural Resources Defense Council in 1984 marks the beginning of the constitution of a public that is taking ownership of the problem” [BAD 19, p. 249]. From that moment on, several petitions were sent by associations that joined the NRDC, always supported by a growing number of scientists, and these actions were reported by the media. The ensuing debates on the use of antibiotics in livestock, particularly as growth promoters, were widely publicized in newspapers, including the New York Times and the Washington Post. The arguments supported were generally in line with the newspapers’ editorial line and political commitment, or that of their owner, giving further proof that the debate was becoming politicized. The years 2000–2012 marked a new turning point in these debates. An audience was forming around the actions of NGOs and consumer associations, which called not only on the public authorities, but also, for the first time, the actors of the agri-food industry. Their request was twofold: the introduction of regulations on antibiotic use in livestock farming and the provision of meat without antibiotics for consumers. The NGO coalition launched campaigns such as “Keep Antibiotics Working” in 2001, conducted surveys, gathered data, and published scientific studies. The silence of the public authorities led NGOs to intensify pressure on private industries to engage in the production of meat without antibiotics. This is exactly what Perdue Farms, Foster Farms

In a One Health Perspective

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and Tyson Foods did, followed by McDonald’s, which in turn put pressure on the suppliers. In addition, the NGO coalition, this time led by NRDC, sued the Food and Drug Administration (FDA) in 2011 to force it to implement regulations on antibiotic use. The antimicrobial resistance problem arose in the public arena, but some part of the problem, at least that dealing with its relationship with food, moved into the judicial arena. Finally, a new campaign in 2012, “Meat Without Drugs”, targeted not only producers but also traders, such as Trader Joe’s. Over the course of these different campaigns, we saw the emergence of a public problem and then an increasingly large audience, including a plurality of actors. Gradually, several documents published by the FDA indicated the gradual recognition it gave to the problem, and it finally banned growth-promoting antibiotics in 2016. Nevertheless, actions targeting private industry, including fast food chains, are continuing. There are also new breeding programs aimed at restructuring intensive poultry farming, introduced by producers such as Perdue Farm (NAE, No Antibiotics Ever, or NMI, No Medically Important). All these converging actions thus end up producing a vast public mobilization that goes far beyond the scope of the first actors concerned, and reveals the extent of awareness of the problem. In terms of governance, they also reflect the deployment of a model based on various forms of collective mobilization oriented toward a demand for public action as its outcome. This outcome is also the result of intense awareness-raising work, as well as the mobilization of active audiences. On the other hand, in the French model, public action is at the origin of communication targeting “the general public”. 1.4. Conclusion A global problem such as antibiotic resistance can be considered as both a revealing factor in the geography of the local territories responsible for its treatment, and a challenge for the limits of these same territories, which it crosses, overflows, and pushes to reconfigure. This reconfiguration requirement is both theoretical and institutional. On the theoretical level, it questions the boundary of human–animal relations, as well as their relations with the environment. At an institutional level, it paves the way for reflection on the governance of public health problems, and its openness to a multiplicity of actors. However, the approach to solving the problem remains highly anthropocentric in theory, even from a One Health perspective. The question then becomes whether the One Health approach to the antimicrobial resistance problem should include intervention areas, human health and

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animal health, by locating the environment as a vector of transmission, or whether it should rethink its purpose using new concepts such as the Wildlife Conservation Society’s “health ecosystem”, for example. At an institutional level, the leadership of research programs through human health reflects the theoretical anthropocentrism that underlies them. The One Health concept thus ends up working like a buzzword whose performative value is sometimes perceived as an injunction. In concrete terms, it also often acts as an umbrella concept housing an ever-increasing number of scientific institutions and disciplines, without any real reflection on their effective expressions, thus creating new areas of competition and power struggles. This is turn leaves the mixed impression that the foundations of a truly holistic perspective on the boundary object of antibiotic resistance remain to be constructed. 1.5. References [AND 16] ANDREMONT A., “Antibiotiques et antibiorésistance, un avatar singulier de l’histoire planétaire”, Questions de communication, vol. 1, no. 29, pp. 15–27, 2016. [ARQ 16] ARQUEMBOURG J., “L’antibiorésistance en France, du risque à la menace pour la santé publique”, Questions de communication, vol. 1, no. 29, pp. 29–47, 2016. [BAD 19] BADAU E., De la mise à l’épreuve de l’alimentation par l’antibiorésistance au développement des concepts sans antibiotique et One Health: publicisation et communication en France et aux Etats-Unis, ICS PhD thesis, Université Sorbonne Nouvelle-Paris 3, Paris, 2019. [BER 16] BERGER T., “Doit-on s’inquiéter de l’usage d’additifs antibiotiques en élevage? Évolution des questionnements liés à l’antibiorésistance animale”, Vertigo, vol. 16, no. 3, p. 9, 2016. [CAR 15] CARLET J., LE COZ P., Tous ensemble, sauvons les antibiotiques. Positions du groupe de travail spécial pour la conservation des antibiotiques, Ministère des affaires sociales, de la santé et des droits des femmes, Paris, p. 3, 2015. [CRE 16] CREMIEUX A.-C., “Brève histoire du plan antibiotique de ministère de la Santé en France”, Questions de communication, vol. 1, no. 29, pp. 87–93, 2016. [FOR 15] FORTAN N., “La surveillance comme dispositif-frontière, La triple ontologie des bactéries résistantes d’origine animale”, Revue d’anthropologie des connaissances, vol. 9, no. 2, pp. 265–290, 2015. [JEN 19] JENSEN C.S., NIELSEN, S.B., FYNBO L., Risking Antimicrobial Resistance, A Collection of One-Health Studies of Antibiotics and its Social and Health Consequences, Palgrave Macmillan, Basingstoke, UK, 2019.

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[MCK 17] MCKENNA M., Big Chicken, the Incredible Story of How Antibiotics Created Modern Agriculture and the Way the World Eats, National Geographic, Washington, DC, 2017. [MOR 16] MORRIS C., HELLIWELL R., RAMAN S., “Framing the agricultural use of antibiotics and antimicrobial resistance in UK national newspapers and the farming press”, Journal of Rural Studies, vol. 45, pp. 4–53, 2016. [SCH 04] SCHWABE C.W., “Keynote address: the calculus of disease – importance of an integrating mindset”, Preventive Veterinary Medicine, vol. 3, no. 62, pp. 193–205, 2004. [STA 89] STAR S.L., GRIESEMER J., “Institutional ecology, ‘translations’, and boundary objects: amateurs and professionals on Berkeley’s Museum of Vertebrate Zoology”, Social Studies of Science, vol. 3, no. 19, pp. 387–420, 1989. [SET 04] SETBON M., Risque, sécurité sanitaire et processus de décision, Elsevier, Amsterdam, The Netherlands, 2004. [TRO 09] TROMPETTE P., “Retour sur la notion d’objet-frontière”, Revue d’anthropologie des connaissances, vol. 3, no. 1, pp. 5–27, 2009. [WOO 18] WOODS A., BRESALIER M., CASSIDY A. et al., Animals and the Shaping of Modern Medicine, One Heath and its Histories, Palgrave Macmillan, Basingstoke, UK, 2018.

 

2 “Our Health in Danger.” The Extension of Sanitization through Media Coverage of Health Alerts. Que Choisir, 60 millions de consommateurs, 2008–2018

2.1. Introduction Health, beyond its specific domain (that of care and the clinic), tends to be convened in a wider public space, in which the media now plays a central role. Thus medical information has been taken over by a “public scene of health issues” [LAF 07, p. 11] in which multiple strategies are deployed by social actors more or less directly concerned with public health issues – medical field, political field, patient associations, pharmaceutical industry, and, increasingly, diversified industries – so the activity interferes with public health issues (agri-food, chemicals, electronics, etc.). Entire sectors of the economy are now being given an active role in health and well-being, with industrial products becoming a source of pollution, toxicity, and various, more or less proven, risks. The media echoes these multiple public problems – often public health problems – revealing a major trend toward the sanitarization1 of consumption, an extension of a “sanitarization process of social issues” [FAS 96], [PEL 06]. The objective of this chapter is to observe this trend through the prism of a particular media production:                                         Chapter written by Benoit LAFON. 1 “Sanitarization” is understood as the process of putting a public question in terms of health. See etymology of the French word for health “santé”: origin, the Latin sanus, in good health (i.e. “healthy”), giving sanitas, santé [PIC 02, p. 497].

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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“consumer information,” i.e. information produced by magazines published by consumer associations2. We have selected for analysis two French consumer and generalist magazines on the issue of consumption, Que Choisir and 60 Millions de Consommateurs, assuming that the sociodiscursive analysis of their contents will reveal aspects of the sanitarization process mentioned earlier. Therefore, the question this chapter seeks to answer is the following: to what extent does consumer information, a media industry dealing with industrialized products, produce information related to health? Is this information growing, and, if so, which new socioeconomic and societal territories are now affected? 2.2. Analyzing the consumer press to understand the new health territories 2.2.1. Consumer and health press Consumer information for the general public has the advantage of translating into the media the economic and societal issues affecting citizenconsumers, i.e., the French population as a whole. This specific press, embodied by the two aforementioned magazines, has enjoyed a growing audience, as some sociologists and historians have shown [CHA 05], [DES 06]. Initiated in the 1930s in the United States and Great Britain, consumer groups quickly became active in printing and publishing highcirculation newsletters and magazines. In France, based on family associations (Union nationale des associations familiales), the State created an advisory committee on consumption in 1960 and then, in 1967, the Institut national de la consommation (INC), which published the magazine 60 millions de consommateurs (which became 60 Millions in 1995) from December 1970. The magazine 60 millions de consommateurs studied here is, therefore, a title published by the INC, an établissement public national à caractère industriel et commercial (EPIC) under the supervision of the minister in charge of consumption. As a report by the Cour des comptes published in 2016 points out, it contributes significantly to INC’s resources through the sale of published magazines, which represented an average of approximately 100,000 monthly copies for 2015 (to which must be added special issues, which sold more than 2 million copies over the year). The same report indicates “competition turning to the advantage of Que Choisir,” the second magazine studied in this chapter. Published by the Union fédérale                                         2 Currently 15 consumer associations are approved by the French state. https://www.incconso.fr/content/les-associations-de-consommateurs.

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des consommateurs – Que Choisir (a non-profit organization created in 1951), this magazine, launched in 1961, has grown steadily. In 1972, Que Choisir’s denunciation of the Morhange talcum powder (containing too high concentration of a bactericide that caused the death of 36 children) attracted a large audience, with subscriptions rising from 50,000 in 1970 to 288,000 in 1973 [CHA 05], [WIE 77]. Since then, Que Choisir has positioned itself as an independent player, including public authorities, while its distribution has risen to more than triple that of 60 millions de consommateurs. While a “consumerist momentum in France in the early 1970s” was witnessed [CHA 05, p. 165], information and communication practices related to consumption became widespread over the next 50 years, with the aforementioned magazines diversifying their offerings through online subscriptions and paid services. In doing so, these two consumer magazines have revealed the main lines of a growing “info conso” (consumer information), which is intended to be picked up by other media (TV news, radio, social media). Que Choisir, in particular, appears to be an important defining feature of risk news, as the analysis will show. 2.2.2. Analyzing health-oriented sanitarization of consumption

coverage

to

reveal

the

This consumer press, whose primary function is to provide information on products and services of all categories available on the market (quality, cost, comparisons, risks), reflects public problems related to health and its marginal groups. As soon as a product presents a danger or risk, health – a more or less visible category – is explicitly or implicitly summoned by the presence of an alert or, at least, a warning. It is these mobilizations, sometimes minimal, sometimes supported, of health by consumer information that we will examine over a 10-year period, from 2009 to 2018. In order to measure the attention given to consumer issues in relation to public health issues, the method used is the analysis of some publications of Que Choisir and 60 millions de consommateurs. A front page has the advantage of being a strong symbolic marker [BLA 18], the monthly magazine and its coverage, a media object, being the subject of multiple remediations in order to constitute the public agenda. The analysis, therefore, initially consisted of collecting 10 years of front pages for the two magazines, i.e., 209 covers (full years over the 2010–2018 period)3. The next                                         3 The corpus compiled for the survey includes 209 front pages, representing all the magazines since May 2009 for 60 millions and since September 2009 for Que Choisir.

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step was to carry out a systematic survey of front pages referring in one way or another to health. This sociodiscursive analysis combined the contributions of grounded theory, content analysis, and linguistic analysis of framings [ENT 93] and points of view4 [RAB 08], [RAB 17], technically based on the functionalities of the Nvivo® software. The survey followed a three-fold logic, which will constitute the outline of the chapter: analysis of the diversification of consumer information themes related to health, construction of a discussion on the growing health risks in an industrialized context, and, finally, implementation of a media-based health alert logic, which will allow us to discuss the sociopolitical implications. The following table summarizes the categories created in these three levels of analysis, which we will refer to throughout the text.

Table 2.1. Categories selected for the analysis of the media coverage of health warnings

Finally, let us conclude these methodological remarks with a twofold limitation of the analysis. First, while the 10-year time frame highlights important trends as we will see, it does not allow us to trace the trajectory of public problems in their entirety. Health has fed various societal and                                         4 Following A. Rabatel, we will use the abbreviation POV to designate the concept of “point of view.”

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socioeconomic domains for several decades, as Foucault has shown, and these limitations must be placed within this broader framework, described in particular by D. Fassin [FAS 96], who is interested in the “political space of health.” Second, we have limited ourselves to an analysis of the general framework of various fields, without going into detail of the articles only outlined by their title. A thorough analysis of published content (through discourse analysis) would probably make it possible to more precisely identify the consumption sanitarization process, which we will only outline in broad terms. 2.3. Sanitarization of revealed consumption: diversification and growth of “health” themes in consumer information The first step of the survey was to identify the areas of media coverage related to health issues in 60 millions and Que Choisir, in order to observe the changes in their coverage. The approach adopted was as follows: collect all the front pages of the two magazines over the 2008–2018 period (209 in total), import these covers into an image format using Nvivo®, and then carry out content analysis. The content analysis was carried out by identifying the themes present on the front page of our analysis: references on the front pages could be either obvious (presence of the word “health”) or thematic (related to the field of health, such as drugs), or explicitly related to health issues (“toxicity,” “danger,” risks related to “pollution,” etc.). At the end of this work, 316 front page titles were identified. Subsequently, their coding in the software involved a series of operations: selection of the area concerned on the front page (in order to establish the percentage of coverage in terms of the editorial area), coding of this area on the three categories of indicators (non-exclusive categories: theme, framing, POV), and finally retranscription of the title in order to carry out a complementary lexical analysis. As far as the point we are now developing is concerned, this analysis was, therefore, a measure of coverage. To do this, we measured the parts of the editorial space on the front page devoted to the different themes, and observed their distribution and changes over the 10 years considered. In doing so, we tried to highlight the “silent periods and media rushes” mentioned by F. Chateauraynaud [CHA 08, p. 10]: “The media do not come out with everything and anything and impose their own constraints on the relevance of warning signals. Not everything is published in the press, far from it, and it sometimes takes a frantic repetition of the proofs for the editors to create a

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‘thread’ or ‘file’.” The press and, more generally, all the information media do not systematically cover sensitive or allegedly sensitive issues, which requires that these issues be constituted as public problems of political interest. However, published by structures independent of traditional press groups, the consumer press, as mentioned in the previous section, has the characteristic of actively participating in this emergence of public problems, being located at the interface between civil society and the media. Thus, the two magazines studied – Que Choisir in particular – are often at the forefront of press publications on new public and public health issues (refer to the Morhange talcum powder case in the 1970s). Que Choisir is cited in research on public problems linked to asbestos [HEN 03], antibiotic resistance [COR 16], or endocrine disruptors [CHA 14, p. 112]. In doing so, this consumer press reveals the growing socioeconomic stakes of health, increasingly linked to “good” consumer practices. Let us now examine the way in which the two magazines discuss the issue and public health themes. A first overview is given by the use of the French term “santé” itself in the headlines. The following diagram, produced by Nvivo®, shows this. It is a “synapsis,” i.e. a visualization of the junctions between terms, referring to questions of “lexical morphology” [ELU 00]. The interest here is to have a synthetic view of the convocation of the French term for health on the front page.

Figure 2.1. Nvivo® synapsy of the word “santé” on the front page of 60 millions de consommateurs and Que Choisir. Subjects which appeared in our survey included the following phrases: “animal health,” “threat,” “children’s,” “eat better,” “health labels”

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The ways in which health is convened appear to be varied. Illustrative rather than analytical, this diagram shows several mobilizations of the term. On the one hand (left part), health is convened either as a field of activity or as a specific condition for enunciators and readers. In the first case, we can also find “healthy applications,” “healthy margarines,” and “complementary health products.” In the second, references are to “our,” “your,” “his,” or “their” health, or more generally to “health.” As we can see, the notion of health is particularly broad and polysemous, referring to a specific sector (the socioeconomic field of health), or to questions relating to other sectors (food, polluted housing, harmful products, etc.), all within a variety of perspectives involving advice, warnings, and even denunciation. It is clear that a broader health territory seems to be emerging. Let’s leave for now the questions of framing and points of view (next parts) to deal with the themes of this consumer information in relation to health. The list of themes has been presented earlier (Table 2.1). Let us now examine how these themes have evolved over the past 10 years, using surveys constructed from the count of the latter in the global corpus (60 millions + Que Choisir).

Figure 2.2., Table 2.2. Health-related consumer information: Annual increase in the number of front pages and coverage (in Figure 2.2: % of editorial space for each)

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The analysis sought to characterize the headlines of two health-related magazines in order to identify the specific themes5, grouped in Table 2.2 into five meta-themes, and to observe their evolution over the decade studied. Our first lesson learned (see Figure 2.2, % coverage curve): some coverage devoted to consumer problems with public health implications is increasing significantly and almost constantly. Thus, from about 25 headlines representing less than a quarter of the editorial surface of the United Nations each year at the beginning of 2010, this coverage increased at the end of the decade to about 40 titles per year, i.e., nearly half (and even half in 2017) of the editorial space of some issues of 60 millions and Que Choisir. Questions posing health issues, therefore, seem to become central to consumer information, revealing the sanitarization process already mentioned. What subfields of this information does this upward trend concern? Second, the generalized increase in the sanitarization of consumer information affects all themes, with more or less marked increases. Table 2.2 attempts to clarify this point. The five meta-themes are indicated in columns, for which we have counted the number of headlines on the front page each year (in rows). Two groups of themes emerged from this review. First, there are two dominant and established health themes, i.e., those that have been at a sustained level of media coverage since the beginning of the decade in 2010: “food” and “health.” Second, there are three emerging themes, some of which are progressing more quickly, but with more variable media coverage from year to year: “home,” “hygiene,” and “multipurpose.” Let us return to these themes, which reveal the extension of media coverage related to health issues (for an overview of the themes, we can also refer to the summary table in the appendix to this chapter). Concerning the themes that we have qualified as “classic” – food and health – the visualization in Table 2.2 shows a slight progression over the decade. However, their media coverage is relatively high, with an average of more than ten headlines per year for food and eight for health. The editorial surface coverage rates of some are also relatively high (11.7% for food, 6.9% for health). Qualitatively, the themes have interesting characteristics.                                         5 Sixteen themes (grouped into five meta-themes) were developed during the content analysis (see Table 2.1): food, personal hygiene, cosmetic hygiene, animal, safety device, DIY, children’s toys, household appliances, household electricals, multipurpose, medical devices, hospital professions, illness, drugs, mutual health fund, and tobacco.

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We will address this point in the next section on framing, but we can already point out a twofold movement: on the one hand, the extension from health to consumption, and on the other hand, the extension from diet to health. The extension of health toward consumption is reflected in the growing presence of specific health issues on the front page, through the following themes: medical devices; hospital professions; illness; drugs; mutual health funds, and tobacco. Through issues related to medical costs and health insurance, and mutual funds, health is mainly treated economically, in the same way as the growing marketing efforts of “OCAM (organismes complémentaires d’assurance maladie, complementary health insurance organizations) in a saturated and highly competitive market where economic and political uncertainty is high” [CRI 11, p. 73]. In parallel with the competition between OCAMs, the rise of medical devices (glasses, hearing aids, blood pressure monitors, etc.) and the dynamics of the pharmaceutical industry (the question of “medicines” and the treatment of “diseases” and also “tobacco”) reflect the growing consumerization of public health, which is reflected in consumer magazines. The extension of nutrition toward health is perceptible by the development of the focus on nutritional quality and the dangers linked to pollution. This sanitarization of food reveals the logic of increased risks due to industrialization: “food is promoted first and foremost because it raises health, safety, environmental and economic issues that go beyond the individual or household and concern the community. Food choices are a source of danger for many aspects of social life, which contributes to their high public visibility and to problems that attract the attention of public authorities” [DE 15, pp. 10–11]. This importance of the health framework for consumer issues in food goods reflects a double injunction: an injunction to involve consumers in being increasingly vigilant, and an injunction to encourage public authorities to take action in the form of warnings (which we will discuss in the analysis of points of view at the end of the chapter). While food from a public health perspective is a theme that has long been on front pages, new themes are now emerging with a similar framework: personal hygiene, cosmetic hygiene, animal, safety devices, DIY, children’s toys, household appliances, and garden electricals. Here again, we have grouped these themes into two meta-themes: “hygiene” and “home” (see Table 2.1 for details). Table 2.2 shows that these two meta-themes are growing faster than the “health” and “nutrition” themes mentioned earlier. Their coverage is relatively high, with an average of 5.3% of the editorial

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surface area devoted to public health issues for hygiene and cosmetic products, and 6% for household products, an increasingly diversified category (household products, toys, safety devices, etc.). These industrial products, consumed on a large scale, are now analyzed and subjected to multiple tests and comparisons, particularly in terms of their safety and “security.” It is noteworthy that the most important emerging themes concern products that include potentially toxic components, such as cosmetics, hygiene products (especially diapers), and household products. This is a classic warning mechanism, with consumer magazines – and through them the UFC Que Choisir and the INC – participating in the construction of public health problems. This interdisciplinary issue – the emergence and construction of public problems through media coverage and the production of media events – overlaps with the findings and analyses of many authors in recent years, highlighting the different trajectories of these problems. Indeed, while some are well established, others are in the process of being established and are struggling to emerge. Two examples, present in our corpus in small numbers, illustrate this phenomenon: indoor air pollution and antibiotic resistance.

Figure 2.3. Excerpts from the front pages of Que Choisir (Que Choisir, no. 484, September 2010; Que Choisir, no. 523, March 2014)

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These two cases show differentiated emergences. Indoor pollution is a relatively recent problem, “in search of its audience” according to R. Crespin and B. Ferron [CRE 16, p. 170], who explain that the difficulty lies above all in the fact that it is intertwined with other problems (outdoor air, asbestos, climate), which does not encourage its empowerment: “It is during a period favorable to environmental issues, in the 2000s, that the journalists interviewed during the survey recall having addressed the indoor air problem. The latter then appears all the more relevant as it can be linked to political and health issues in order to ensure its internal (hierarchy) and external interest, i.e. to interest readers.” Since then, this problem has become a recurrent one, as shown by our surveys (see the DIY theme, appendix table). Antimicrobial resistance, for its part, appears to be a very old public health problem but still in the process of being established: “Until 2014, there was no antimicrobial resistance problem, but a myriad of problems related to the increase in bacterial resistance to antibiotics”. Thus, the variety of problems related to antimicrobial resistance hinder its own emergence, in a logic comparable to that of indoor pollution. A problem of specific medical origin, antimicrobial resistance actually includes various issues, such as food, related to agricultural production, agri-food industry, and veterinary treatments, leading to its emergence as a tedious public problem. As noted by L. Corroy and E. Roche [COR 16, p. 103], “We note a gradation in the narrative of risk, thus showing the penetration of medical whistleblower discourses into journalistic representations: from the risk to human health associated with overuse of antibiotics in animals, we are now experiencing the proven threat.” The difficulty of media construction of antibiotic resistance is perceptible on the front page of the March 2014 issue of Que Choisir (see Figure 2.3), cited by L. Corroy and E. Roche as a key step in the media definition of the problem: while the title refers to an endangered efficacy for antibiotics – therefore, a public health problem – the illustration refers to a chicken – therefore, to food – on which bacteria enlarged under a magnifying glass are represented. The crossover of drugs, food, veterinary care, industrialized food, and even sanitary conditions for food preservation leads us to pose the following question: What is the real challenge of antimicrobial resistance? While the answer is obviously multifactorial, it is clear here that the media format is struggling to deliver a clear message, thereby blurring the usual frameworks and struggling to produce hierarchical information on real issues. This emergence of problems that are now multiple (rather than complex) is evident in the corpus analyzed, to the point that a theme has emerged,

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which we have called “multipurpose.” This is indeed the emergence of multirisk issues involving many products, most of them industrial.

Figure 2.4. “Multipurpose” theme: extracts from the front pages of 60 millions de consommateurs and Que Choisir

The figures mentioned earlier give an overview of this type of theme that, although it does not statistically represent a large number of occurrences, is recurrent and qualitatively presents a particular enunciation. When a magazine chooses this angle for its front page, the warning is obvious (we will come back to this in the next section). In this respect, while the two magazines analyzed developed this new interdisciplinary theme, they have different editorial positions. 60 millions chooses the recurrent publication of a black list of products (two issues over the decade), while Que Choisir focuses on the emergence of omnipresent substances: nanoparticles for the case presented in Figure 2.4, or even endocrine disruptors, for example. Therefore, the movement toward the sanitarization of consumption, perceptible through the diversification and growth of health-oriented themes addressed by consumer information, is strongly engaged, to the point that public problems currently being defined are being publicized with a view to consolidating them. This can be seen as a societal movement driven by consumer associations, “sub-political” organizations in the sense of U. Beck

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[BEC 92, pp. 197–198], who, in his classic book Risk Society, refers to the role of the media in this process, as well as their limitations: “From the wealth of hypothetical findings, publication in the mass media selects specific examples which thereby achieve the addition of familiarity and credibility that they can no longer attain as pure scientific results. (...) This defining power of media publicity can obviously never anticipate the political decision.” The media are thus assigned by their actors an essential role in defining credible public problems but cannot guarantee their translation into public policies. In doing so, this media coverage of societal issues and problems contributes to the growing mobilization of health, thereby producing new health territories. Alongside this movement, the specific field of health continues to produce consumer goods, thereby broadening its progress in society, as P. Mansier, C. Méadel, and C. Secail [MAN 14, p. 9] state when referring to the development of health communication techniques: “In a context of reduced health resources and spending, encouraging patient involvement through individualized care via the most widely used information medium in the world (the connected smartphone), appears to be a promising innovation in the eyes of public health authorities.” These digital medical devices constitute a growing part of our corpus on the theme of health, denoting the consumerization of health. The sanitarization of consumption and consumerization of health – this dual movement of extending health territories, revealed by consumer information – must now be analyzed from the point of view of its framing in order to improve understanding of its social logic. 2.4. From risk to involvement through health warnings: analysis of framings and points of view of consumer health information Through the global analysis of consumer magazines, we measured the progression and quantitative extension of new consumer themes involving health issues. This extension of sanitarization to the different areas of consumption must now be qualitatively assessed. To this end, we will study the framing and points of view mobilized by the magazines in the media coverage of the previously updated themes. The first step involved carrying out a semio-linguistic analysis of the “framing” of this sanitarized consumer information, an activity described by

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R. Entman [ENT 93, p. 52] as a journalistic activity involving “selection and salience”: “To frame is to select some aspects of a perceived reality and make them more salient in a communicating text, in such a way as to promote a particular problem definition, causal interpretation, moral evaluation, and/or treatment recommendation for the item described. Typically frames diagnose, evaluate, and prescribe.” This framework was identified by transcribing the 316 titles mentioned and recording the “narrative” [LIT 08] of the health theme mentioned earlier. The characterization of the information giving rise to the media coverage of the theme is central here. For example, a painting (a “house,” for example) could have been the subject of sanitarized media coverage framed on “pollution” or “toxicity,” and not only of media coverage framed on its quality. Finally, this analysis of themes and framings was completed by a list of “points of view” (POVs), making it possible to relate, according to A. Rabatel [RAB 17, p. 75], the enunciative postures of the speakers, namely, the journalists of 60 millions and Que Choisir. Starting from the concept of POV in Rabatel’s sense, it appears that these journalists practice an overenunciation, coproduction of a POV by a speaker “appearing to say the same thing while modifying for his benefit the domain of relevance of the content or its argumentative orientation.” Journalists thus produce specific POVs, alerting the public or advising them on the dangers of the products consumed, “as if they were giving themselves the role of completing the initial POV, of giving it its true meaning, its true stake” (ibid.). The POVs thus complement the themes and framings reflecting in a way the journalistic angle mobilized. 2.4.1. Differentiated framings focused on health risks Framing, previously defined as the journalistic work of highlighting selected aspects of reality, can be highlighted by the operation of narrating the mediatized theme. This is, therefore, the guidance given in the article. The magazines analyzed rarely limited themselves to indicating only one theme, and additional information almost systematically complemented the theme. For example, information on a food product could be framed according to its quality, cost, and toxicity. Coding using Nvivo® led us to select the following 10 framework indicators: comparative analysis, cost management, danger-risk, effectiveness, pollution, quality, safety, toxicity, deception, and truth revelation. The overall processing of the entire corpus enabled us to construct a contingency table crossing the co-occurrences of

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the themes and framings previously indicated (see appendix, Table 2.a2). This was in order to highlight the dominant framing of sanitarized consumer information. The processing of this table by a factorial analysis of the correspondences made it possible to draw the following graph.

Figure 2.5. CFA on the co-occurrences of themes and framing. For a color version of this figure, see www.iste.co.uk/pailliart/health.zip

The interpretation of this analysis, based on the statistical results available in the appendix (see Table 2.a3 and Figure 2.a1), reveals three main profiles for framing consumer health information, linked to specific themes. We have represented them in groups in the previous graph. The first profile concerns the classic health theme. It is in fact an economic framework for medical activity, mainly hospitals, the medical professions, as well as health insurance (e.g., Que Choisir No. 543, January 2016: Prescriptions médicales. Les médecins ne jouent pas le jeu [Medical prescriptions, doctors are not following the rules]). The emergence and diversification of medical devices leading to increased costs for consumers (glasses and hearing aids) also contribute to this gradual extension of health toward the production of industrial consumer goods. Consumer information is reflected in the production of numerous comparisons aimed at highlighting the devices with the best quality/price ratios and providing advice to readers, for example, in April 2014 (60 millions No. 492): Verres progressifs. Vous pouvez payer moins cher (Progressive lenses. You can pay less).

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The second profile that appears clearly falls under the theme of “food.” The dominant framework of this theme is undoubtedly quality. Nutritional quality is regularly highlighted in the headings of the articles, whether it concerns specific products (Qualité de la viande. Menace sur le bœuf [Meat quality. Threat to beef]), Que Choisir No. 501 from March 2012, or a group of brands for which associations are advocating for new standards. This was the case in September 2014 with 60 millions (No. 496) claiming new information on packaging practices: 100 produits à la loupe. Qualité nutritionnelle. Le meilleur et le pire. Oui à un nouvel étiquetage! (100 products under the microscope. Nutritional quality. The best and the worst. Yes to new labelling!). Sanitarization is, therefore, developing in terms of product information, on the packaging itself, to the point that the magazines analyzed are based on lies, partly, from manufacturers: tromperie sur les étiquettes (deception on labels; 60 millions No. 451 from August 2010, relating to salmon). This framing, which we have called “deception,” is in fact coupled with a denunciatory point of view that we will analyze below. Finally, let us note a regular progression of the “pollution” framework, with emphasis on this “food” theme (see Que Choisir No. 572 from September 2018: Fruits de mer et sel marin. Vous mangez du plastique ! [Seafood and sea salt. You are eating plastic!]) and increasingly present on the theme of “DIY” due to the emergence of the public problem of indoor air pollution, mentioned in the previous section. The third profile, finally, relates to the framing of “toxicity,” “safety,” and “effectiveness” of the themes concerning hygiene and home. Hygiene here mainly concerns personal hygiene and cosmetic products. Indeed, the rise of cosmetic products and a para-pharmacy market gave rise at the end of the 2000s to a “cosmetic vigilance,” regulated at the European level by European Parliament Regulation (EC) No 1223/2009, and at the French level by an implementation of this cosmetic vigilance by the Agence nationale de sécurité du médicament et des produits de santé (ANSM; before 2012 known as the Agence française de sécurité sanitaire du médicament et des produits de santé, Afssaps)6. This growth of a warning on the toxicity of certain cosmetic and hygiene products is part of a reinforced health framework for consumer goods that did not fall directly into this category. Starting in 2010, moisturizers, sunscreens, make-up products, and feminine hygiene products were the subject of health and safety concerns,                                         6 Available at: https://www.ansm.sante.fr/Declarer-un-effet-indesirable/Cosmetovigilance/ Cosmetovigilance (accessed May 15, 2019).

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giving rise to ever more elaborate comparisons. The illustration given earlier shows this, with the publication of a “reference book” for consumers to identify potentially toxic components. The warnings were thus being extended to all products containing these types of substances, especially household products, and to particularly sensitive categories of consumers, such as young children. The 60 millions issue from September 2018 is exemplary in this respect. The headline read Protégez bébé des toxiques! Couches. Les plus efficaces. Les moins à risques (Protect babies from toxic substances! Diapers. The more effective, the less the risk). With 52% of the surface area being the front page, this issue offered a detachable “safe products guide” designed to make parents responsible. In doing so, it revealed a strong trend: the emergence of a benefit/risk pair, i.e., the integration by consumer information of the sanitarization of consumption, with goods consumed having to be efficient while presenting an acceptable level of risk according to specialists. In the terminology of the articles, this benefit/risk combination is translated into efficacy/toxicity.

Figure 2.6. Toxicity, a new framework for consumer information: the case of cosmetics (Que Choisir no. 545, March 2016)

Figure 2.7. The benefit/risk ratio materialized by the toxicity/efficiency framework

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This emergence of an accepted risk, combined in a way with consumer information, seems to us emblematic of the historical trend that Foucault [FOU 04, p. 68] analyzed in his book Naissance de la biopolitique: A whole education of danger, a whole culture of danger appeared in fact in the nineteenth century, which is very different from these great dreams or threats of the Apocalypse such as the plague, death, war from which the political and cosmological imagination of the Middle Ages, even in the seventeenth century, was nourished. Disappearance of the horsemen of Apocalypse and, on the contrary, appearance, emergence, invasion of daily dangers, daily dangers perpetually animated, updated, put into circulation by, therefore, what could be called the political culture of danger in the 19th century and which has a whole series of aspects. This political culture of daily dangers, therefore, finds new means of activation in the media, as the analysis of the framing of the themes on sanitarized consumer information has just shown. In fact, the mediatization of these dangers requires the mobilization of committed points of view on the part of the enunciators, which the last parts of our study will reveal. 2.4.2. From advice to warnings: the construction of points of view The question of omnipresent daily dangers raised by Foucault is coupled with the political management of the issue involving the rationalized construction of conceptual and disciplinary tools, in order to produce standards aimed at improving the health of growing urban populations. The study of specific health cases will make it possible, through statistics, to define risks and thus to warn against dangers and identify periods of crisis: “Case, risk, danger, crisis: these are, I believe, concepts that are new, at least in their scope of application and in the techniques they call for” [FOU 06, p. 63]. Foucault’s analysis, which covers the 19th Century, was confirmed throughout the subsequent periods, and the media coverage of health coupled with the rise of mass media would play a central role in the involvement of citizen-consumers, who became public-consumers warned by the media about the dangers of their environment. To take up the gradation mentioned by Foucault, whether it concerns the media coverage of worrying cases, a potential risk, proven dangers, or a health crisis, journalists producing consumer information develop their POVs consisting of various enunciating

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postures in the sense of Rabatel [RAB 17, p. 75]. In other words, a consumer journalist may jointly over- or under-report the initial POV of a scientist or whistleblower. The under-reporting concerns cases where the journalist manifests “that his or her POV is being developed” “in reference to,” “in the light of,” “under the instructions of”; over-reporting “is equivalent to giving oneself the last word”; while joint-reporting positions the journalist as being the enunciating alter ego of the initial enunciator, which “is not without symbolic benefits when he or she is an authority” [RAB 17, p. 75]. In this sense, the journalist producing the warning on a health risk sometimes overstates the initial point of view (excessive caution of a source), but he may understate it in the case where he refers completely to the scientific authority, for example. More frequently, joint-enunciation postures are mobilized, with journalists benefiting from scientific work, and consumer associations publishing consumer press producing tests, analyses, and comparisons themselves to jointly enunciate warnings. However, while journalists and consumer associations do precisely the job of warning and sometimes denouncing, “they are not exposed to any reprisals and are not faced with the moral dilemma of loyalty,” as are whistleblowers who work to disclose hidden data [CHA 99, p. 14]. Therefore, warning of dangers is made easier for these enunciators, journalists, and consumer associations, since they legitimize their position as producers of public problems. POV analysis was, therefore, carried out taking into account the overframing carried out by consumer magazines which, after having indicated on their front pages the theme and framing – for example, cosmetics and toxicity – stated a specific point of view (most often by co-enunciation) – in case of the previous example, an exclamative warning: Hygiène-beauté. Gare aux molécules toxiques ! Les substances qui perturbent notre système hormonal (Hygiene-beauty. Beware of toxic molecules! Substances that disrupt our hormonal system) (Que Choisir No. 513, April 2013). At the end of the POV analysis, we created the following graph to assess the change in the mobilization of POVs according to the two magazines. This histogram reveals the comparative changes in the POVs mobilized in one of the two magazines. The views are ranked in order of increasing involvement in public health warnings: at the bottom of the histogram’s bars, in plain language, are indicated the more neutral POVs, simple facts, then advice and questioning indicating doubt about the risk, then upwards, in shaded darkened gray, increasingly assertive POVs, alerts, then exclamations (when the title contains an exclamation), and finally denunciation (accusation for example). The contribution of this visualization is twofold: it

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illustrates, on the one hand, the increasing share of warnings and denunciations throughout the decade beginning in 2010, with a clearer growth toward the end of the decade, and on the other hand, differentiated POVs, with Que Choisir mobilizing the denouncing POVs more than its competitor.

Figure 2.8. Changes in points of view in regard to consumer health information (in % of front pages from the United States)

This approach is complemented by an analysis of the themes mobilized. Table 2.a4 in the appendix summarizes this information. It shows that denunciation applies mainly to the costs of public health as well as to the excesses of industrial food, and that the warning, if it affects all themes, is a POV more particularly mobilized in the emergence of new themes: risks related to cosmetics, at home (indoor pollution, household products, etc.), and multiform risks. For this last theme mentioned earlier (the “multipurpose” meta-category), it is striking to note that the POVs linked to the exclamative alert is favored, at par with denunciation. We will now focus on a few cases that reveal the mechanics of warning construction and citizen involvement through spectatorial involvement. 2.4.3. Mechanics of media-based involvement and empowerment

health

alerts:

consumer

The media coverage of health warnings is based on the implementation of many discursive processes, of which we have already given some insights in the previous sections. The choice of a theme, its framing, as well as the

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mobilization of POVs, are all decisive elements in this process. This last part presents in more detail the way in which warnings are constructed at a semidiscursive level, in such a way as to provoke spectatorial involvement, supposedly coupled with citizen involvement and consumer responsibility. Two semio-discursive warning processes will first be analyzed; the illustrations below give an overview of them.

Figure 2.9. Semi-discursive warning processes. The left figure: “deodorants, our lungs are in danger” and the right figure: “76 honeys, residues of antibiotics and pesticides!”

Thus, the discursive materialization of risk recurrently involves the enumeration on the front page of supposedly dangerous materials. The accumulation effect can be simply textual, which is the case in most situations, especially in the case of pollutants. It can also be produced graphically, as in the case earlier, where an aerosol can diffuses a set of substances, symbolized by their names in the vaporized cloud. The chemical connotation of technical terms then acts as a proof of toxicity. Another recurrent process used is the use of photographs of children. Although mainly related to problems affecting them (car seat safety, diapers, etc.), these uses of images of children or babies are part of a framing process linked to concerns about the future. The aforementioned case thus highlights the sustainable pollution of the soil and the food chain, as well as shown in Figure 2.10 (below), reinforcing involvement through the use of the possessive: “our contaminated children.” These few examples are only a glimpse of the multiple semiotic processes of warning involved, which are combined with other discursive processes, for example, language

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professionals. Rabatel [RAB 17, p. 340] thus evokes “partially said emotions” in press titles, which can be compared to indignation arousing what is not being said, in order to involve the reader. Indeed, faced with an elliptical or descriptive title without a clearly formulated warning (exclamation or denunciation), the reader may be called upon to construct his indignation himself according to formulated clues, for example, 60 millions No. 405 from November 2011: Tabac. Des additifs et du sucre pour appâter les jeunes (Tobacco. Additives and sugar to lure young people). It is then up to the reader to create his indignation, the magazine giving enough clues for the point of view of indignation to be aroused, although underreported. Finally, the media construction of the health warning contributes in many cases to the construction of risk, as we mentioned earlier when we used Foucault’s work. Two examples seem to us to be emblematic of this progressive construction of risk, which ends up being presented as a major danger: nanotechnologies and endocrine disruptors. Nanotechnologies, studied by P. Chaskiel [CHA 14, p. 22] from the point of view of the construction of a public problem, pose a particular problem, that of the ability to involve: “In a history of the public theme of risks marked by an accumulation of universalizable and singular themes (nuclear, pollution, asbestos, GMOs, etc.), that of nanotechnologies specifically reveals a tension between the problems linked to applicability (technoindustrial) and those of implicitness (societal).” While applicability is, according to the author, a “multifaceted strategy” of political and technoindustrial projects, the ability to involve refers to effects that can be discussed in terms of universalizable requirements, i.e., also to “a possible questioning of the raison d’être of products because of their potentially negative ecological effects” [CHA 14, p. 22]. The difficulty concerning the debate on nanotechnologies thus refers, according to Chaskiel, to the fact that debates on the possible involvement in public health – hence the term “ability to involve” – of these new techniques are developing even before the dangers have been proven. This ability to involve (and therefore, potential implication) contributes to the emergence of the precautionary principle as a political issue. In fact, the media coverage of health warnings contributes to legitimizing the implementation of precaution (notably analyzed by [CHA 14, p. 27]. The table below clearly shows this progression, from a precautionary ability to involve to involvement.

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As we can see, the ability to involve nanotechnologies was pointed out in 2009 by 60 millions, which underlined their “infiltration” into our daily lives. There was no clear warning, but a palpable concern. Eight years later, the two magazines had headlines twice on the subject, and in three cases it was information focused on nanoparticles, saying “stop,” denouncing them exclamatively, or urging consumers to spot them (see Figure 2.4). This clear increase in warnings, from doubt to denunciation, is evident for several other risks presented on the front page, such as endocrine disruptors. Here again, the warning is intended to be obvious and undoubtedly possible. 60 Millions No. 442, October 2009

Nanotechnologies. Elles s’infiltrent en douce dans notre quotidien (Nanotechnologies. They are sneaking into our daily lives)

60 Millions No. 529, September 2017

Stop aux nanoparticules. Bonbons, gâteaux... 100% des produits testés en contiennent. Zéro mention sur les étiquettes (Stop nanoparticles. Sweets, cakes... 100% of the products tested contain it. Zero mention on labels)

Que Choisir No. 560, July, August 2017

Crèmes solaires. Bien protéger sa peau. 21 crèmes testées, 6 insuffisantes. Protection UVA et UVB. Allergènes. Perturbateurs endocriniens. Nanoparticules (Sun creams. Protect your skin well. 21 creams tested, 6 insufficient. UVA and UVB protection. Allergens. Endocrine disruptors. Nanoparticles)

60 Millions No. 536, April 2018

Efferalgan, spasfon, zyrtec, euphytose... Des nanoparticules dans les médicaments ! (Efferalgan, spasfon, zyrtec, euphytosis... Nanoparticles in drugs!)

Que Choisir No. 566, February 2018

Nanoparticules. Attention, elles se cachent partout. Comment les repérer. Pourquoi c’est inquiétant. Alimentation. Beauté – hygiène, médicaments (Nanoparticles. Be careful, they’re hiding everywhere. How to spot them. Why this is worrying. Food. Beauty – hygiene, drugs)

Table 2.3. Top headlines on nanotechnologies – nanoparticles

Without going into the question of the construction and development of a new public health problem, we point, with the case of endocrine disruptors, to a generalized polyphony of warning. Indeed, in May 2017, the two

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magazines made their headlines on the issue, and a parallel between the two framings is obvious. It concerns a generalized warning, left, right, and center: a warning by mobilizing children at an iconic level, a warning by collective involvement (“our contaminated children,” “our health in danger”), setting up a plan of action (“protecting ourselves”), and, in the case of Que Choisir, denouncing the “power of lobbies.” These two front pages thus seem to us to reveal major trends in public health throughout the decade starting in 2010, as highlighted in this study: increasing public involvement through health alerts, the multiplication and hardening of alerts toward the denunciation of industrial practices, and the generalization of these alerts to consumer territories that were hitherto foreign to public health issues.

Figure 2.10. Health warning on endocrine disruptors

As a sign of this growing sanitarization, there is no longer a rest in terms of health warnings. While the end-of-year holiday periods usually constitute a break in the headlines – magazines usually engage in relatively neutral comparisons of toys or party products – the end of 2018 presented a break. Issue 575 of Que Choisir from December 2018 read as follows: Repas de fêtes. Notre sélection au meilleur prix. Composition des produits. Des substances nocives que les industriels vous cachent (Holiday meal. Our

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selection at the best price. Composition of the products. Harmful substances that manufacturers hide from you). 2.5. Conclusion Owing to this survey, we have showed how the emergence and systematization of the media coverage of health warnings are evident in the consumer press, carrying their share of responsibility and injunctions for public-consumers. In this chapter, we were able to assess this process in the decade starting 2010, during which warnings multiplied, going as far as denouncing industrial practices. The sectors affected are increasingly diverse, such as widespread warnings on omnipresent and invisible threats (see Figure 2.4), potentially affecting future generations (Figure 2.10). This sanitarization of consumption must be placed in a broader sociohistorical context. As A.C. Ambroise-Rendu noted, “Health was one of the media’s obsessions from the late 19th Century concerned to ensure the victory of hygiene that stabilizes social order. This obsession was first expressed in advertisements on the last pages of popular dailies” [AMB 14, p. 245]. We could extend the remark and note that while the end of the 19th Century initiated a consumerization of health through the media, the beginning of the 21st Century developed another obsession: the sanitarization of consumption, made necessary by the industrialization of lifestyles and consumption, as well as by the industrialization of the media. Health information to try to avoid health threats is essential for contemporary individuals, who are obliged to constantly manage risks and dangers. As Foucault [FOU 04, pp. 67–68] points out: It is no longer simply this kind of external protection of the individual himself that must be ensured. Liberalism is committed to a mechanism where it will at all times have to arbitrate the freedom and security of individuals around this notion of danger.... It can be said that after all, the motto of liberalism is “to live dangerously.” Widespread and industrially produced, can media health warnings continue to produce the societal involvement they seek to generate? While the reality of behavioral change remains an open question, the extension of the sanitarization of consumption by the media reveals an undeniable reality – the symbolic industrialization of biopolitics.

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2.6. References [AMB 14] AMBROISE-RENDU A.-C., “Quand le thème de la santé assure la santé financière des journaux. Les heures de gloire de la publicité médicale dans la presse fin de siècle”, Le Temps des Médias, vol. 2, no. 23, pp. 245–249, 2014. [ARQ 16] ARQUEMBOURG J., “L’antibiorésistance en France, du risque à la menace pour la santé publique. Analyse d’un processus inachevé de constitution d’un problème public”, Questions de Communication, vol. 1, no. 29, pp. 29–47, 2016. [BEC 92] BECK U., Risk Society: Towards a New Modernity, Sage, London, 1992. [BLA 18] BLANDIN C., DAKHLIA J., PAVARD B. et al., Manuel d’analyse de la presse magazine, Armand Colin, Paris, 2018. [CHA 99] CHATEAURAYNAUD F., TORNY D., Les Sombres précurseurs. Une sociologie pragmatique de l’alerte et du risque, Éd. de l’École des hautes études en sciences sociales, Paris, 1999. [CHA 05] CHATRIOT A., CHESSEL M.E., FRIDENSON O., Au nom du consommateur: consommation et politique en Europe et aux Etats-Unis au XXe siècle, La Découverte, Paris, 2005. [CHA 08] CHATEAURAYNAUD F., Les lanceurs d’alerte dans l’espace politique, réflexions sur la trajectoire d’une cause collective, available at: http://gspr.ehess.free.fr/docs/FC/doc/doc-FC-2008-Lanceurs.pdf [accessed January 15, 2019], 2008. [CHA 14] CHASKIEL P., “La précaution ‘des’ nanotechnologies”, Communication et Organisation, vol. 1, no. 45, pp. 19–32, 2014. [CHA 14] CHATEAURAYNAUD F., DEBAZ J., CHARRIAU J.P. et al., Une pragmatique des alertes et des controverses en appui à l’évaluation publique des risques. Rapport final. Observatoire socio-informatique en santé environnementale, ANSES, EHESS, available at: https://www.anses.fr/fr/documents/ANSES-FtRapportEHESS-GSPR-Anses-2013.pdf [accessed January 15, 2019], 2014. [COR 16] CORROY L., ROCHE E., “Anti-antibios? Représentations de l’antibiorésistance dans la presse magazine française entre 2001 et 2014”, Questions de Communication, vol. 1, no. 29, pp. 95–110, 2016. [COU 16] COUR DES COMPTES, Rapport Particulier (articles L. 133-1, L. 143-3, R. 133-3 et R. 143-1 du code des juridictions financières), Institut National De La Consommation, https://www.ccomptes.fr/sites/default/files/EzPublish/20161207rapport-S2016-2738-INC.pdf [accessed January 15, 2019], 2010–2016. [CRE 16] CRESPIN R., FERRON B., “Un scandale à la recherche de son public. La construction médiatique du problème de la ‘pollution de l’air intérieur’ en France (1995–2015)”, Politiques de Communication, vol. 2, no. 7, pp. 151–181, 2016. [CRI 11] CRIÉ D., “Le marketing des complémentaires santé”, Les Tribunes de la santé, vol. 2, no. 31, pp. 73–83, 2011.

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[DE 15] DE IULIO S., BARDOU-BOISNIER S., PAILLIART I., “Penser l’alimentation dans l’espace public”, Questions de Communication, vol. 1, no. 27, pp. 7–19, 2015. [DES 06] DESJEUX D., La consommation, Presses universitaires de France, Paris, 2006. [ELU 00] ELUERD R., La lexicologie, no. 3548, Presses universitaires de France, Paris, 2000. [ENT 93] ENTMAN R.M., “Framing: toward clarification of a fractured paradigm”, Journal of Communication, vol. 4, no. 43, pp. 51–58, 1993. [FAS 96] FASSIN D., L’espace politique de la santé: essai de généalogie, Presses universitaires de France, Paris, 1996. [FOU 04] FOUCAULT M., SENELLART M., EWALD F. et al., Naissance de la biopolitique: cours au Collège de France 1978–1979, Gallimard and Le Seuil, Paris, 2004. [FOU 06] FOUCAULT M., EWALD F., FONTANA A. et al., Sécurité, territoire, population: cours au Collège de France, 1977–1978, Gallimard and Le Seuil, Paris, 2006. [GIL 09] GILBERT C., HENRY E., Comment se construisent les problèmes de santé publique. Recherches/Territoires du politique, La Découverte, Paris, available at: https://www.cairn.info/comment-se-contruisent-les-problemes-de-sante-publ-9782707159106.htm [accessed January 15, 2019], 2009. [HEN 03] HENRY E., “Du silence au scandale. Des difficultés des médias d’information à se saisir de la question de l’amiante”, Réseaux, vol. 6, no. 122, pp. 237–272, 2003. [LAF 07] LAFON B., PAILLIART I., “Malades et maladies dans l’espace public”, Questions de Communication, vol. 2007, no. 11, pp. 7–15, 2007. [LAM 14] LAMY J., “Les sources libérales de la biopolitique”, Cahiers d’histoire, no. 123, pp. 57–72, 2014. [LAU 06] LAUDE A., TABUTEAU D., Information et produits de santé, quelles perspectives?, Presses universitaires de France, available at: https://www.cairn.info/ information-et-produits-de-sante-quelles-perspecti--9782130555896.htm. [LIT 08] LITS M., Du récit au récit médiatique, De Boeck, Brussels, 2008. [MAN 14] MANSIER P., MÉADEL C., SÉCAIL C., “Présentation”, Le Temps des médias, vol. 2, no. 23, pp. 5–12, 2014. [MOR 17] MORELLE A., TABUTEAU D., La santé publique, Presses universitaires de France, Paris, 2017. [NOL 15] NOLLET J., “L’emprise du journalisme sur les catégories d’action publique. Le cadrage médiatique de la crise de la vache folle et ses usages dans le champ bureaucratique”, Questions de Communication, vol. 1, no. 27, pp. 21–39, 2015.

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[PEL 06] PELCHAT Y., GAGNON E., THOMASSIN A., “Sanitarisation et construction de l’exclusion sociale”, Lien social et Politiques, no. 55, pp. 55–66, 2006. [PIC 02] PICOCHE J., Dictionnaire etymologique du français, Le Robert, Paris, 2002. [RAB 08] RABATEL A., “Figures et points de vue en confrontation”, Langue française, vol. 4, no. 160, pp. 3–17, 2008. [RAB 17] RABATEL A., Pour une lecture linguistique et critique des médias: empathie, éthique, point(s) de vue, Lambert-Lucas, Limoges, 2017. [RAB 17] RABATEL A., MONTE M., “Pour une analyse énonciative engagée et responsable des discours médiatiques”, Mots. Les langages du politique, vol. 1, no. 113, pp. 117–132, 2017. [WIE 77] WIEVORKA M., L'Etat, le patronat et les consommateurs, Presses universitaires de France, Paris, 1977.

2.7. Appendices

Table 2.a1. Number of headlines classified by theme and year

Table 2.a2. Cross-tabulation of themes and framing of headlines (number of co-occurrences)

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Table 2.a3. AFC on framing themes: contributions and square cosines of the rows and columns in Table 2.a2

Figure 2.a1. CFA framing themes: eigenvalues and % inertia of factors

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Table 2.a4. Percentage of POVs mobilized for each meta-theme on the health conso-info

3 Communication and Environmental Health in Critical American Approaches

3.1. Introduction This chapter presents a review of research on environmental health communication conducted by American researchers on their territory. A visit by a visiting researcher in spring 2018 to the University of Arizona provided an opportunity to explore the work carried out on this rapidly developing subject since the 2000s. Difficulties of access to North American publishers’ journals for European researchers result in an uneven circulation of knowledge about this work. As a result, there is a tendency to make some research orientations, such as the traditions of social psychology and behavioral approaches, more visible, to the detriment of other works that remain less well known. Attention has been focused on scientific work with a critical orientation that focuses on the social conditions of health in relation to living spaces, the latter being associated with residence and work. Environmental health surveys relate the socioeconomic conditions and status of populations in regard to their health status and the state of the environment (urban or rural) in which they live. Questions about “equity in environmental health” have emerged since the early 1990s: In recent years there has been increasing concern that minority (nonwhite) and economically disadvantaged communities bear a disproportionate share of the risks of exposure and of                                         Chapter written by Brigitte JUANALS.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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exposure-related health effects from environmental pollutants. These concerns have been brought to the forefront by the Conference on Race and the Incidence of Environmental Hazards (Bryant and Mohai, 1992), the National Minority Health Conference: Focus on Environmental Contamination (ATSDR, 1992), and the First National People of Color Environmental Leadership Summit (Lee, 1992) [BAN 93]. The health problems mentioned explicitly link environmental risks and contamination with specific populations, indigenous nations, and communities of color. These studies are made possible by the identification of “racial or ethnic minorities” that are part of the census data collected in the United States. The contribution of collecting this data is “the ability to measure inequalities between ethnic and racial categories.” This has resulted in numerous American sociological studies demonstrating that “the combination of ethnic, racial and social dimensions reveals irreducible results for only one of these dimensions” [ALB 08]. In the case of environmental pollutants, the link between toxic waste and groups identified on racial and ethnic grounds is raised as a central element of the problem. It makes it possible to measure the distribution of geographical inequalities by identifying the social and urban environment of the groups studied. In this direction, works such as “Race, Income and Environmental Inequality in the United States” [DOW 08] have continued in sociology to link racial criteria, income levels, and a situation of environmental inequality. The chapter will first present the problem and the selected questioning that combines communicative forms and environmental health problems. The methods of collecting and assembling the corpus of research articles will then be presented. Finally, both qualitative and statistical analyses will be utilized to learn about the scientific orientations and particularities of the selected works. 3.2. Critical orientation publications: marginal approaches and questions in post-positivist work

political

Among the scientific research that deals broadly with the field of health communication, a recent publication of the Journal of Health Communication, a journal dealing with health communication [HAN 15], revealed some striking features. The majority (72%) of this work is conducted by “post-positivistic scholars” according to behavioral and

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quantitative perspectives; 25% is conducted according to the interpretative tradition, and only 3% is part of the critical tradition. Post-positivist perspectives are more present in a reference journal, the Journal of Health Communication, than in Communication Health, which focuses more on interpretative approaches [HAN 15]. Communication work is carried out on themes of general interest related to public health, such as health information (which occupies a central place), interactive communication, education, prevention, promotion, and public campaigns. Drugs are considered to be the “founding discipline” of health communication work that is marked by a culture of disciplines emphasizing quantitative and behavioral methodologies. The themes addressing communication on environmental health topics do not emerge in this review of the work. A presentation of the work conducted in the field of environmental health communication, “Communication Models in Environmental Health” [GUI 13], indicates the topics as being poorly represented in the health communication literature, “eclectic,” “highly interdisciplinary,” and historically rooted in epidemiology, toxicology, chemistry, physical sciences, biology, and medicine. The approach adopted is exclusively functionalist and lists several distinct disciplinary fields: risk communication, crisis communication, corporate communication oriented toward public relations and reputation, environmental health education, and social marketing. The author points out that these studies do, however, have one thing in common: they differ from public health studies (with little attempt to change individual behaviors and lifestyles). They focus on environmental issues and decision-making frameworks for individual or community protection through collective action. This analysis is, in part, consistent with our observations. Critical guidance articles represent a truly marginal part of communication work on environmental health. The issues they raise in terms of power relations, environmental justice, health inequities, racial and ethnic health disparities, domination, or controversies are far removed from questions formulated in terms of impact or functionalist approaches. Critical communication approaches in this field seek to develop unique modes of information or training, investigation, intervention, and cooperation adapted to specific populations. The latter are described according to the criteria of belonging to the most modest socioeconomic categories or to identified communities: native indigenous people, black communities, and Mexican communities. The assumption is that compared to the overall US population, their health status is impaired for identified socioenvironmental reasons. The

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results of this empirical work link health status with the characteristics of populations and their living places, with a particular focus on understanding whether it is possible to establish relationships between communication forms, people’s physical (and social) environment, and their health status. What are the objects of study, the problems, and the fields of investigation of empirical research that are part of a critical perspective? Which schools of thought and which survey methods are employed in conducting such research? What do they reveal about the relationship between the socioeconomic characteristics of populations, health issues, and the territories in which they live? In terms of circulation of scientific knowledge, are these articles present in journals with a high scientific reputation, or, on the contrary, are they found in more peripheral journals? In order to answer these questions, the chapter will present, on this constituted corpus, both qualitative and statistical analyses that we have undertaken. We used, by adapting them to the purpose of the study of environmental health communication and to our problem, some of the coding criteria for the content analysis conducted by [HAN 15]. We will take into account the following criteria: the subject of the study of communication on environmental health divided into several themes; the theoretical frameworks and research trends; the methods of collecting and analyzing the survey data; the stakeholders and communication elements studied; and the level of scale studied. We will also conduct correspondence factor analysis (CFA) and hierarchical cluster analysis (HCA) using open-source text mining and digital humanities data analysis software (TXM, R) to verify the coherence and homogeneity of the corpus. More precisely, we will create a mapping of the corpus constituted by titles, abstracts, and keywords of the articles in order to highlight comparisons (visible in aggregates) or distances from the elements studied. In order to answer the question of the visibility of publication titles, we will take into account the scientific notoriety of journals by their impact factor. The categorization of the articles in relation to the objects of study and the problems they develop, the fields of investigation, and the methods of analysis will make it possible to identify possible correlations between these criteria and the journals in which the articles are published.

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3.3. A specific corpus-building process to identify publications of critical orientation In the corpus development process, we did not use a statistical method that relies on random sampling in the results provided by a search engine, as it was recently done (in 2015), in the journal of research articles on the theme of health communication previously cited [HAN 15]. As the authors pointed out, the approach used in this study, which is based on a random selection (7.4% of articles) from a large set of several thousand articles, is subject to several biases. In our study, the choice to conduct a qualitative and selective analysis gradually became necessary because it was not possible to directly identify, through a computerized literature search in scientific publications, articles proposing critical empirical analyses based on the titles, keywords, and abstracts of these articles. In an exploratory preliminary phase concerning the choice of journals, we first took into account the journals recognized in the field of health communication, as well as environmental health. However, we did not wish to limit ourselves to the titles considered to be the flagship journals of the United States, such as Health Communication, Journal of Health Communication, and Environmental Communication. Journals with lower visibility, such as AlterNative: An International Journal of Indigenous Peoples, Journal of Black Studies, Journal of Political Ecology, Environmental Sociology, etc., are regularly the places where communication work conducted from a critical perspective is published. The difficulty that emerges from reading these articles is that a large number of them are political essays or activist positions that are not empirically supported. This situation is known to American researchers [BOW 02]; according to them, insufficiently reliable data on environmental inequalities are the cause of their insufficient consideration by political and administrative decision-makers. The absence of a rigorous theoretical framework observed in many empirical studies on environmental justice results in a geographical bias in the choice of spatial scales and objectives in the studies conducted. These choices are often not taken into account in the analysis, although they have a significant influence on the results [BAD 07]. In line with the issue raised, the constitution of a corpus of articles limited to critical American works dealing with communication in relation to environmental health led us to exclude works addressing the many problems

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studied in environmental health in other disciplines (toxicology, chemistry, public health, medicine, etc.). In the selection of articles, we first verified the presence of a communicative dimension. Second, we controlled the authors’ use of a scientific method in the social sciences based on a theoretical framework, a field of investigation, one or more investigation methods, and the analysis of the results obtained. The research strategy was based on an iterative cycle that was divided into three stages. The first step was to make a query on the University of Arizona’s documentary website in the Summons faceted search engine, which specializes in scientific and technical information. The first query was composed of the Boolean terms “communication” and “environmental health”; it was associated with the use of faceted engine filters for the discipline “Journalism & Communications,” the content type “Journal Article,” and the time period “from 2000.” The result was 231 references. At the end of this step, we also identified a first set of relevant journals. In the second step, we used the specialized engines of these journals, which allowed us to identify other articles published not only in the targeted journals but also in other journals from the same publisher. In the third step, we selected, by reading the abstracts, the articles that posed critical issues in environmental health communication. This reading also allowed us to identify syntagmata that could help characterize critical analyses based on the indicated investigation methods, with the difficulty that these new requests (about 10), while providing some relevant results, also generated a lot of noise. After about 10 iterations including these three steps, the final corpus was composed of 95 articles. We believe that this set of texts, without claiming to be exhaustive, will nevertheless be able to reflect the critical American work in this field. 3.4. Publishers and journals of critical research articles dealing with communication on environmental health topics Approaches that relate population health to environmental factors, in attempting to intervene on this particular issue, account for a small proportion of communication work on health topics. For the period 2000–2018, the corpus includes 95 articles published in 52 journals, mainly affiliated with major publishers (Elsevier, Sage, Springer, Taylor & Francis, and Wiley). The following table presents the publishers, the journals (with their impact factor), and the number of articles in the corpus associated with each journal:

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Publisher

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Journal, Impact Factor (IF), Number of Articles

Elsevier 4 articles

Environmental Management (IF: 4.005) (1) Environmental Pollution (IF: 4.358) (1) Journal of the Academy of Nutrition and Dietetics (Academy of Nutrition and Dietetics) (IF: 4.534) (1) Science of the Total Environment (IF: 4.984) (1)

Sage 27 articles

Action Research (IF: 0.832) (1) American Sociological Review (IF: 5.063) (1) AlterNative: An International Journal of Indigenous Peoples (IF: 0.194) (1) Critical Sociology (IF: 1.294) (2) Discourse & Communication (IF: 1.254) (1) Environment and Planning C: Government and Policy (IF: 1.864) (1) Health Education & Behavior (IF: 1.899) (5) Journal of Business and Technical Communication (IF: 0.75) (1) Health Promotion Practice (IF: NC) (1) Humanity & Society (IF: NC) (1) Journal of Health and Social Behavior (IF: 2.617) (1) Journal of Language and Social Psychology (IF: 1.594) (1) Journalism (IF: 2.68) (1) Management Communication Quarterly (IF: 2) (1) Organization & Environment (IF: 4.875) (3) Public Understanding of Science (IF: 2.880) (1) Science Communication (IF: 2.387) (3) Urban Education (IF: 2.867) (1)

Springer 7 articles

Environmental Health (IF: 4.876) (2) Journal of Exposure Science and Environmental Epidemiology (IF: 3.083) (1) Environmental Monitoring and Assessment (IF: 1.804) (1) Journal of Urban Health (IF: 1.738) (2) Science and Engineering Ethics (IF: 1.859) (1)

Taylor & Francis 22 articles

Environmental Sociology (IF: NC) (5) Health Communication (IF: 1.71) (2) Journal of Applied Communication Research (IF: 1) (3) Journal of Health Communication (IF: NC) (4) Political Communication (IF: 2.738) (1) Society & Natural Resources (IF: 1.823) (1)

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Environmental Sociology (IF: NC) (5) Health Communication (IF: 1.71) (2) Journal of Applied Communication Research (IF: 1) (3) Journal of Health Communication (IF: NC) (4) Political Communication (IF: 2.738) (1) Society & Natural Resources (IF: 1.823) (1) The Professional Geographer (Official Journal of the American Association of Geographers) (IF: NC) (1) Environmental Politics (IF: 2.695) (3) Journal of Environmental Planning and Management (IF: NC) (2)

Wiley 12 articles

Communication Theory (IF: NC) (1) Journal of Communication (IF: NC) (1) Journal of Policy Analysis and Management (IF: 3.444) (1) Frontiers in Ecology and the Environment (IF: 8.302) (2) Environmental Communication (IF: 1.36) (6) Risk Analysis (IF: 2.898) (Society for Risk Analysis) (1)

Universityrelated journals 3 articles

International Journal of Communication (University of Southern California) (IF: NC) (1) Journal of Political Ecology (University of Arizona) (IF: 1.57) (1) Health Education Research (Oxford Academic) (IF: 2.054) (1)

Other publishers 20 articles

Environmental Justice (Mary Ann Liebert Inc., independent publisher) (IF: 4.534) (5) International Journal of Environmental Research and Public Health (MDPI, an interdisciplinary peer-reviewed open access journal published monthly online by MDPI. MDPI.com is a platform for peer-reviewed, scientific open-access journals operated by MDPI, based in Basel, Switzerland) (IF: 2.145) (2) American Journal of Public Health (American Public Health Association, Washington D.C.–based professional organization for public health professionals in the United States) (IF: NC) (8) Environmental Health Perspectives (monthly open-access journal published with support from the National Institute of Environmental Health Sciences, National Institutes of Health, U.S. Department of Health and Human Services) (IF: 9.81) (5)

Table 3.1. List of publishers, journals, and distribution of abstracts

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The observation we make is that there is a large dispersion of work (31 journals have only one article in the corpus) among a large number of journals. These journals are characterized by their interdisciplinarity while displaying specializations, particularly in environmental sciences, public health and medicine, sociology, education sciences, management, and communication. There is a concentration of publications among major publishers (72 articles, or 75.7% of the total). In terms of journals, only three are affiliated with universities and three others with different editorial actors: an independent publisher; American Public Health Association, known for its high-pricing policy for its journal; and a federal institute of environmental health sciences, National Institute of Environmental Health Sciences, which has chosen open access. Environmental science, public health, and medical journals have a high impact factor, while the vast majority of journals with a strong social science focus (including communication) have a modest impact factor, ranging from 0 to 3. Thirteen journalism and communication journals total 25 articles – only 26.3% of the total. They are affiliated with three publishers, Sage, Taylor & Francis, Wiley, and a university, the University of Southern California. In terms of disciplinary fields, two publications specialize in themes combining communication, environment, or health in their titles; these constitute the highest number of articles in the corpus. The journal Environmental Communication (impact factor: 1.36) contains six articles. It is the publication of The International Environmental Communication Association (IECA), an interprofessional and interdisciplinary association openly committed to environmental sustainability and ethical awareness of environmental issues: The IECA is a professional nexus of practitioners, teachers, scholars, students, artists, and organizations engaged in research and action to find more ethical and effective ways to communicate about environmental concerns in order to move society toward sustainability. (IECA, website ) One journal has a thematic specialization in environmental health in its title: Environmental Health Perspectives, an interdisciplinary publication (focusing on environmental sciences, medicine, toxicology, and chemistry) in open access funded by the American government and having a high impact factor (9.81) frequently found in the so-called “hard” sciences.

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3.5. Analysis of critical research articles communication on environmental health topics

dealing

with

Several trends emerge from the analysis. They make it possible to characterize the articles in these journals according to the different axes selected and to identify the problems they involve. 3.5.1. Categorization of methodological areas

the

corpus

by

six

thematic

and

In this corpus, six main areas appear when reading the articles. By following the characteristics of the collected corpus, they refer to themes or theoretical currents that are structured in the articles. Table 3.2 shows the distribution of items in each category: Categories Ecological approach CBPR Communication_Information_Education Community_University_Partnership Controversy_Activism Theoretical_Dimension

Number of articles 11 15 18 5 22 22

Percentage 11.70% 15.79% 18.95% 5.25% 23.15% 23.15%

Table 3.2. List of categories and distribution of abstracts

Figure 3.1 provides a breakdown by year for each category:

Figure 3.1. Distribution of abstracts by year and category. For a color version of this figure, see www.iste.co.uk/pailliart/health.zip

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In general, over the time period selected, there is a trend toward an increase in the number of articles dealing with issues related to communication and environmental health. The “CommunityUniversity_Partnership” category is poorly represented because it is often present in a secondary way in the category (CBPR, collaborative community-based participatory research). In order to verify that the construction of the corpus was coherent (homogeneity of the corpus) and that the categorization chosen according to a thematic analysis was relevant, three statistical tests were carried out. The first test, based on a correspondence factor analysis (CFA) [BEN 73] carried out using the TXM software [HEI 10], was performed with the text identifier as the variable. Figure 3.2 illustrates the results obtained:

Figure 3.2. CFA factorial plan on the text cloud

Several abstracts (T11, T90, T71), called “outliers,” stood out because of a very different lexicon from that of all the abstracts. After proofreading, it appeared that they fell under the theme of environmental health communication and that the corpus was homogeneous. The second test was based on a CFA conducted by taking into account the entire lexicon of abstracts and selecting the six categories as the variables

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to test the relevance of the categorization. Figure 3.3 shows the results of this CFA projected on the first two axes, which represented 52.62%:

Figure 3.3. CFA factorial plan on the text cloud

It appears that the lexicons used in abstracts related to different categories can be very different. On axis 2, the contrast between the categories “Community_University_Partnership” and “Theoretical_Dimension” appears clearly. On axis 1, the categories “Controversial_Activism” and “CBPR” have opposite positions, although in a less clear-cut way. On the other hand, there is a strong proximity between the lexicons of the “CBPR” and “Communication_Information_Education” categories; this can be explained by the use of participatory methods in the practices described. The third test, based on a hierarchical bottom-up classification, confirms the proximity of the lexis of the abstracts related to the categories “Ecological Approach” and “Community_University_Partnership,” as well as those of the categories “CBPR” and “Community_Information_ Education.” In view of the results of these various tests and after a review of the abstracts, manual categorization was therefore retained. Theoretical articles represent a significant part of the corpus by considering the mode of selection involving the presence of a theoretical

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framework and the elimination of political essays present in large quantities. In general, transdisciplinary approaches are presented as necessary to address complex and multifactorial problems. Ethical concerns arise repeatedly because the approaches developed (present in all categories) involve the active participation of the communities concerned [QUI 18]. In addition, there are concerns about improving the relevance and validity of the work conducted; some examples are provided. Beyond demographic data, the availability of information on lifestyles and consumption patterns and their relationship with the environment for identified communities are highlighted as necessary to understand the roles played by their ecosystem [BUR 10]. A sociohistorical analysis of the environmental conditions characterized by “urban risk” shows that they are due particularly to the historical accumulation of industrial sites at risk in time and space with minimalist consideration of demographic and housing transformations in the urban areas concerned [ELL 13]. In the numerous studies focusing on “environmental justice,” the authors stress the need for solid empirical foundations that are too often insufficient [BOW 02]. In empirical studies, the consideration of spatial scales and objectives is presented as a central element conditioning the validity of the work carried out [BAD 07]. In the conduct of “environmental governance,” regional, multistakeholder, and community-based collaborations are recommended for better environmental protection and management [REO 17]. 3.5.2. Affirmation of a critical approach in theoretical and methodological frameworks Research literature journals, presented as “meta-analyses,” are important benchmarks for identifying theoretical frameworks and associated methodologies. Several research trends appeared during the analysis of articles. Some of them were identified on the basis of the communities studied, such as “Indigenous studies,” “Black studies,” and studies of “Latinos.” The theoretical integration of the work is structured by inclusion in research streams based on explicitly displayed thematic or methodological criteria: the Community-University Research and Action Partnership (CURAP) [HAY 11], community-based participatory research (CBPR) [MIN 10], environmental health literacy (EHL) [FIN 15], and communication infrastructure theory (CIT), also known as the “ecological approach.” It should be noted that the ecological approach focuses on analyzing the interactions between the neighborhood communication action

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context and the health of resident communities in order to reduce health inequalities [WIL 13]. In these critical approaches, “environmental justice research” is present in an interdisciplinary way in theories focused on the involvement of different types of stakeholders. The notion of “environmental justice” is mentioned repeatedly in both theoretical articles and case studies. It is found within the educational fields with the notion of “Environmental Health Literacy and Justice” [RAM 16]. The issues are built on the analysis of power and domination logic, on economic and social inequalities generating health inequalities linked to housing and workplaces, and on racial or ethnic discrimination. They are also based on taking into account the identity, cognitive, linguistic, and cultural characteristics of the communities involved. The theories developed can provide theoretical frameworks based on several theories. For example, the theoretical basis of the CBPR is plural: Following a brief review of the conceptual and historical roots of CBPR, Kelly’s ecological principles for community-based research and Jones’s three-tiered framework for understanding racism are introduced as useful frameworks for helping explore several key challenges [MIN 04]. Similarly, university–community partnership theory and the ecological approach are frequently associated with CBPR. The methods of collecting and analyzing survey data presented in the articles are varied and largely correspond to the disciplinary orientations of the journals. The data collected from the survey fields include the constitution of various corpuses (speeches, texts, institutional reports), the observation of practices, the consideration of organizational strategies or different stakeholders, and the collection of a diverse range of data (chemical, geographical, health, medical, sociological, etc.). Qualitative methods are based on observation, interviews (non-directive or semidirective), and content or discourse analyses of materials from the field. The methods are also quantitative, using questionnaires and statistical processing. In regard to informing and involving stakeholders, the authors observed that regional and “multistakeholder” collaborations, including in particular minority groups such as Native Americans [REO 17], are essential to achieving meaningful results in environmental management and protection.

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EHL is developing as a new theme, or even a disciplinary field (“a new subdiscipline”). It offers potential improvements in the dissemination of scientific research at the intersection of risk communication, health literacy education, environmental health sciences (EHS), research on communication theories, and the development of a safety culture [FIN 15]. Several theoretical approaches (university–community partnerships, CBPR, ecological approach) are based on university–community partnerships (CURAP) and community participation (CBRP) that are affected by the environmental problem being studied. Attention is paid to certain categories of actors wishing to express disagreement and opposition to industrial projects, such as environmental justice organizations (EJOs) and grassroots groups [LIN 12], [MAR 14]. Madeleine Akrich [AKR 10] situates the grassroots movements, which emerged in the late 1970s, by differentiating them from the large environmental protection associations: they are small local collectives formed mainly by people from the working-class world, with low incomes and low levels of education. Women and ethnic minorities are also very well represented. Concerned with local problems that directly concern them, these groups come together in response to health problems due to a potentially dangerous environment (contaminated site, high-risk industry, etc.). However, the authors note that they also demonstrate their ability to go beyond a local scale: The grassroots environmental movement often protests locally unwanted land uses. Many grassroots groups have, however, expanded their agenda to the scale of environmental justice. Explanations for this scale transformation include historical circumstances, individuals’ radicalization through activism, and the growth of environmental justice networks [TOW 10]. Finally, more broadly, stakeholder involvement can be extended to all relevant actors [REO 17]. The dissemination of information on environmental health issues can be explored at the media level, for example, to address environmental controversies [POO 16]. It is frequently addressed to small groups, with information that can be analyzed in terms of access to detect disparities linked to ethnic and racial criteria [KEL 15], for example, in visual form tests such as map features [SEV 15], or in narrative forms (storytelling and metaphors) designed and intended for specific cultural communities such as

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the Native Americans of the northern United States and Hawaii [KAL 09]. The work reflects efforts to overcome difficulties of understanding and tensions due to “racial differences” and power inequalities [MER 17]. Researchers are also interested in the materialization of information through environmental empirical data visualizing risks [KUC 17] or the development of prototypes of a mobile artifact for measuring personal chemical exposure [ROH 15]. In the levels of scale most frequently encountered in the studies conducted, we note the intermediate level concerning targeted organizations, small groups, or communities identified by their residential places or by racial, ethnic, or social criteria. The macro level (concerning the media, cultural communities, or broader societal reflection) is also present. In these empirical studies, case studies are frequent and are carried out with the aim of validating methodologies based on specific theories and survey methods. They can be conducted at the community level by studying forms of public participation such as local bucket brigades responsible for collecting, analyzing, and disseminating environmental information [ORO 03]. The training and active involvement of “lay health promoters” from Latin American communities (promotoras de salud,) in public information and education campaigns, is another example [BUS 14], [MIN 10]. There are studies that have analyzed interorganizational collaborations to assess their information-sharing modalities and their ability to mobilize social and material resources to solve a community’s problem [WIL 10], even if it faces a major environmental threat [KEG 10]. In conclusion, we have tried in this chapter to reflect the current trend of critical orientation research in American literature dealing with communication on environmental health issues. This abundant research is characterized by wide dispersion and marginalization within the majority of post-positivist research. However, as a common good, environmental health requires the consideration of all stakeholders. The articles highlight the value of studying it as a political issue within the current debate in the public arena. 3.6. References [AKR 10] AKRICH M., BARTHE Y., RÉMY C., “Les enquêtes ‘profanes’ et la dynamique des controverses en santé environnementale” in AKRICH M., BARTHE Y., RÉMY C.(eds), Sur la piste environnementale: Menaces sanitaires et mobilisations profanes, Presses des Mines, Paris, available at: books.openedition.org/ pressesmines/315 [accessed October 30, 2018], 2010.

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[ALB 08] ALBA R., DENTON N., “Les données raciales et ethniques aux États-Unis: entre connaissance scientifique et politique des identités”, Revue française de sociologie, vol. 49, no. 1, pp. 141–151, 2008. [BAD 07] BADEN B.M., NOONAN D.S., TURAGA RAMA M.R., “Scales of justice: is there a geographic bias in environmental equity analysis?”, Journal of Environmental Planning and Management, vol. 50, no. 2, pp. 163–185, 2007. [BAN 93] BANKS ANDERSON Y., COULBERSON S.L., PHELPS J., “Overview of the EPA/NIEHS/ATSDR worshop: ‘equity in environmental health: research issues and needs’”, Toxicology and Industrial Health, vol. 9, no. 5, pp. 679–683, 1993. [BEN 73] BENZÉCRI J.P., L’Analyse des données. Tome 2: l’analyse des correspondances, Dunod, Paris, 1973. [BOW 02] BOWEN W., “An analytical review of environmental justice research: what do we really know?”, Environmental Management, vol. 29, pp. 3–15, 2002. [BUS 14] BUSH D.E., WILMSEN C., SASAKI T. et al., “Evaluation of a pilot promotora program for Latino forest workers in southern Oregon”, American Journal of Industrial Medicine, vol. 57, no. 7, pp. 788–799, 2014. [DOW 08] DOWNEY L., HAWKINS B., “Race, income and environmental inequality in the United States”, Sociological Perspectives, vol. 51, no. 4, pp. 759–781, 2008. [ELL 13] ELLIOTT J.R., SCOTT F., “The historical nature of cities: a study of urbanization and hazardous waste accumulation”, American Sociological Review, vol. 78, no. 4, pp. 521–543, 2013. [FIN 15] FINN S., O’FALLON L., “The emergence of environmental health literacy – from its roots to its future potential”, Environmental Health Perspectives, vol. 125, no. 4, pp. 495–501, 2015. [GUI 13] GUIDOTTI T.L., “Communication models in environmental health”, Journal of Health Communication, vol. 18, pp. 1166–1179, 2013. [HAN 15] HANNAWA A.F., GARCÍA-JIMÉNEZ L., CANDRIAN C. et al., “Identifying the field of health communication”, Journal of Health Communication, vol. 20, no. 5, pp. 521–530, 2015. [HAY 11] HAYNES E.N., BEIDLER C., WITTBERG R. et al., “Developing a bidirectional academic-community partnership with an Appalachian-American community for environmental health research and risk communication”, Environmental Health Perspectives, vol. 119, no. 10, pp. 1364–1372, 2011. [HEI 10] HEIDEN S., MAGUÉ J.-P., PINCEMIN B., “TXM: une plateforme logicielle open-source pour la textométrie – conception et développement”, in JADT 2010: 10th International Conference on the Statistical Analysis of Textual Data, ENSLyon, Rome, Italy, pp. 1021–1032, 2010. [KAL 09] KALBFLEISCH P.J., “Effective health communication in native populations in North America”, Journal of Language and Social Psychology, vol. 28, pp. 158–173, 2009.

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[KEG 10] KEGLER M.C., RIGLER J., RAVANI M.K., “Using network analysis to assess the evolution of organizational collaboration in response to a major environmental health threat”, Health Education Research, vol. 25, no. 3, pp. 413–424, 2010. [KEL 15] KELLEY M.S., SU D., BRITIGAN D.H., “Disparities in health information access: results of a county-wide survey and implications for health communication”, Health Communication, vol. 31, no. 5, pp. 575–582, 2015. [KUC 17] KUCHINSKAYA O., “Connecting the dots: public engagement with environmental data”, Environmental Communication, vol. 12, no. 4, pp. 495–506, 2017. [LIN 12] LINDEMAN N., “Subjectivized knowledge and grassroots advocacy an analysis of an environmental controversy in Northern California”, Journal of Business and Technical Communication, vol. 27, no. 1, pp. 62–90, 2012. [MAR 14] MARTINEZ-ALIER J., ANGUELOVSKI I., BOND P. et al., “Between activism and science: grassroots concepts for sustainability coined by environmental justice organizations”, Journal of Political Ecology, vol. 21, no. 1, pp. 19–60, 2014. [MER 17] MERSON M., “Four principles to guide interactions: assisting communities confronting environmental contamination”, Science Communication, vol. 39, no. 1, pp. 125–136, 2017. [MIN 04] MINKLER M., “Ethical challenges for the ‘outside’ researcher in community-based participatory research”, Health Education & Behavior, vol. 31, no. 6, pp. 684–697, 2004. [MIN 10] MINKLER M., GARCIA A.P., WILLIAMS J. et al., “Si se puede: using participatory research to promote environmental justice in a Latino community in San Diego, California”, Journal of Urban Health, vol. 87, no. 5, pp. 796–812, 2010. [ORO 03] O’ROURKE D., MACEY G.P., “Community environmental policing: assessing new strategies of public participation in environmental regulation”, Journal of Policy Analysis and Management, vol. 22, no. 3, pp. 383–414, 2003. [POO 16] POOLE R., “A corpus-aided ecological discourse analysis of the Rosemont Copper Mine debate of Arizona, USA”, Discourse & Communication, vol. 10, no. 6, pp. 576–595, 2016. [QUI 18] QUIGLEY D., LEVINE A., SONNENFELD D.A. et al., “Survey on using ethical principles in environmental field research with place-based communities science and engineering ethics”, Science and Engineering Ethics, vol. 25, pp. 477–517, 2018. [RAM 16] RAMIREZ-ANDREOTTA M.D., BRODY J.G., LOTHROP N. et al., “Improving environmental health literacy and justice through environmental exposure results communication”, International Journal of Environmental Research and Public Health, vol. 13, no. 7, p. E690, 2016.

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[REO 17] REO N.J., WHYTE K.P., MCGREGOR D. et al., “Factors that support Indigenous involvement in multi-actor environmental stewardship”, AlterNative: An International Journal of Indigenous Peoples, vol. 13, no. 2, pp. 58–68, 2017. [ROH 15] ROHLMAN D., SYRON L., HOBBIE K. et al., “A community-based approach to developing a mobile device for measuring ambient air exposure, location, and respiratory health”, Environmental Justice, vol. 8, no. 4, pp. 126–134, 2015. [SEV 15] SEVERTSON D.J., “Testing map features designed to convey the uncertainty of cancer risk: insights gained from assessing judgments of information adequacy and communication goals”, Science Communication, vol. 37, no. 1, pp. 59–88, 2015. [TOW 10] TOWERS G., “Applying the political geography of scale: grassroots strategies and environmental justice”, The Professional Geographer, vol. 52, no. 1, pp. 23–36, 2010. [WIL 11] WILSON S.M., RICE L., FRASER-RAHIM H., “The use of community-driven environmental decision making to address environmental justice and revitalization issues in a port community in South Carolina”, Environmental Justice, vol. 4, no. 3, pp. 145–154, 2011. [WIL 13] WILKIN H.A., “Exploring the potential of communication infrastructure theory for informing efforts to reduce health disparities”, Journal of Communication, vol. 63, pp. 181–200, 2013.

4 Health, Environment and Nuclear Energy: Temporalities and Trajectories of Collective Mobilizations

4.1. Introduction From May 1 to June 30, 2018, the “Truth and Justice for Environmental Health” march toured France with the slogan Les cobayes lancent l’alerte (guinea pigs are raising the alarm). This initiative reminds us, if necessary, that the theme of environmental health can be promoted by social movements, while its slogan follows the sociological character of the whistleblower, triggering a critical process and shaping a new public problem through the perception of warning signs concerning a danger or risk [AMP 98]. The aim of this mobilization was to publicize the health and environmental consequences of pollution in the public arena and have them recognized in order to put them on the political agenda and ensure that an appropriate public policy is put in place. Among the types of pollution reported is that related to the nuclear power industry. This pollution, inherent to its activities, is quite severe and involves in particular its radioactive, thermal, or chemical discharges into the environment. There have been dozens of examples since the launch of the nuclear power program, one of the latest (in spring 2018) being a tritium concentration 20 times higher than the normal level detected in the drinking water intake at the Cruas–Meysse nuclear power plant. This chronic pollution affecting the environment and health was regulated and defined by regulatory systems, and a specific law has evolved in France with a certain autonomy from common law in order to                                         Chapter written by Mikaël CHAMBRU.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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allow the operation of nuclear reactors and thus meet the political objectives of public authorities [MAR 15]. The autonomy of nuclear law has an impact on anti-nuclear protests, particularly those in the judicial arena [CHA 18]. It raises significant issues since this unique right governs areas such as the safety of nuclear installations, the responsibility of operators, the protection of human health and the environment, and public information and participation. In this sense, it poses a challenge to the government regarding environmental health issues, for example, in the articulation between nuclear law, environmental law, health law, and labor law. However, these legal issues must not overshadow the place and role of collective mobilizations in the dynamics of environmental health controversies. After a stopover at the Bugey nuclear site on May 27, the Truth and Justice for Environmental Health march took place a few days later around the Belleville-sur-Loire site for a day on the theme “Nuclear and health, all concerned, all threatened.” In the summer of 2018, a second march in connection with this first initiative was organized at the La Hague nuclear site in Paris, again to raise public awareness about nuclear-related issues and the need for a nuclear-free future in order to achieve a better environment for our health. Far from being new, this environmental and health framework for the nuclear risk register was promoted by opponents of the development of the nuclear power program from the very beginning of the dispute. In this sense, they participate over time in the definition of the nuclear energy public problem, its publicization, and politicization [CHA 14a]. Thus, during the first mobilizations in Fessenheim and Bugey in the early 1970s, fighting the emerging nuclear industry was presented as a “fight for life” for those who wanted to stop being guinea pigs. Militant iconography uses these discursive elements, with, for example, the use on posters and stickers of skeletons and skulls to visualize the effects of radioactivity according to the life/death dichotomy. For 50 years, nuclear energy and its social criticism have, therefore, also been one of the territories of old communication in which a facet of the public problem of environmental health has been defined and constructed. This chapter aims to show how the forms and dynamics of collective antinuclear action contribute to this social construction and simultaneously shed light on the complex and changing relationships between social movements and the institutional political sphere. More concretely, the aim is to return to the trajectory of anti-nuclear mobilizations and the production within them of public nuclear problem frameworks over time in terms of interlinked environmental health. Social movements are thus considered here as one of

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the many discrete spaces where problems outside public attention are defined and where compromises between actors are stabilized after periods of confrontation, negotiation, and transaction [GIL 12]. Marked by fluctuating intensity, these definitional processes are sometimes silent in that public controversy can be almost non-existent, media coverage low, and visible actions very limited. Although they may not be visible at first sight, they are not non-existent. This chapter analyzes precisely this participation of the anti-nuclear movement in constructing this “nuclear risk, health, and environment” problem rather than re-establishing this problem in the public space and the ways in which it is dealt with by public institutions. However, this participation does not take place outside the dynamics of public space, since it reveals processes of publicity and confinement over time, between visibility and non-visibility, recognition and non-recognition, publicity and discretion. In situations, it is also, and above all, conflictual: the anti-nuclear arena constitutes a space of conflict where definitional struggles take place around the framing of the environmental and health stakes of nuclear risk, and this conflict contributes to fixing its outline, its stakes, its forms, its boundaries, and its movements in time and space [CHA 19]. This participation and conflict can be observed through the infocommunication practices of social movements when they oppose detractors, organize collectively, develop strategies, shape tactical repertoires, construct discourses, perform in protest, communicate, and inform. Without forgetting that other social actors involved in the controversy simultaneously restore and circulate these militant words within the public space, they oppose, discuss, and criticize them, also participating, through processes of requalification, in the displacements of the problematization of the said public problem. The analysis presented in this chapter is based on empirical materials collected during a multisite ethnographic survey conducted as part of a PhD thesis [CHA 17], as well as on subsequent investigations into the nuclear power controversy and an analysis of the existing literature. It approaches the temporal dynamics of protest action in terms of interactions of actors located and contextualized, both contextually and structurally. It also postulates, from a pragmatic perspective, that mobilizing against nuclear power depends as much on the availability of resources, predispositions to militancy, the understanding of cyclical variations, sometimes unexpected recurrences, a more or less rational cost–benefit calculation, the multiplicity and dynamics of individual commitments, the way in which these different elements are perceived and the meaning given to them, beliefs and symbolic

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issues, etc. [MAT 12]. Through a process-oriented and configurational approach, it is a question of detaching oneself as much as possible from any normative premise in the analysis of lived and empirically observable social experiences, such as the presupposition of a necessary homogenization of representation and definition of a situation as an introduction to the alignment of a framework to be imposed on a public problem and by extension to the participation of disparate individuals in a social movement [MAT 02]. The purpose of such an approach is to be able to grasp and analyze the problematization “in progress” within the social movements of the public nuclear problem in terms of environmental health, even if this is not the most visible dimension of this public problem in the protest, media, and political arena. 4.2. From compromise confined to its conflicting publicity Long before the industrial development of the nuclear power generation was considered, health problems linked to radioactivity were identified and addressed by institutions in specialized areas, without spilling into the public space through advertising phases. Scientists and doctors very early on identified the source of the harmful effects of this new form of discovered energy: artificial radioactivity. This containment did not result in the absence of definitional struggles and collective mobilizations to problematize the dangers of nuclear power. In France, in the 1920s, scientists directly affected by the effects of radioactivity issued warnings leading to the creation of the first radiation protection standards regulating the number of maximum permissible doses, as well as legislation enabling recognition of occupational diseases arising from certain radiation-induced diseases and compensation for the first professional victims of radioactivity [FOA 12]. Over the following decades, the principles for the development of radiation protection standards evolved from individual acceptability to social acceptability of radiological risks, simultaneously with the attempt by the authority to establish scientifically this notion of expert legitimacy, even though socioeconomic elements played an increasingly important role in this definitional process in the face of scientific considerations [FAG 79]. During the 1950s and 1960s, connections were made between the protests against the French atomic tests in the Sahara, the question of the fate of radioactive waste, public health concerns documented by the multiplication of scientific books and articles on the dangers of nuclear energy, and the extension of the controversy concerning the effects of low doses of radioactivity [CHA 99].

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In 1959, these connections led to an initial collective mobilization to denounce and oppose the project to dump radioactive waste in the Mediterranean Sea. Under the aegis of Commander Cousteau, it brought together local elected officials and scientists to promote the idea of a general poisoning of the environment and an economic and health threat to the public. Following this first public emergence of the nuclear problem, social criticism of nuclear technology continued to denounce its health and environmental effects, as well as the risk of major accidents, but again for a time away from the public space, in specialized microspaces and by a network of limited actors. The latter was developed in particular within the Association contre le danger radiologique (ACDR) founded in 1962, which became the Association pour la protection contre les rayonnements ionisants (APRI) in 1966. For a decade, it carried out important work compiling scientific, technical, and military information, combining various international sources, official or otherwise, on the dangers of radioactivity, which it analyzed, translated, summarized, and explained in order to make them accessible to the greatest number of people. The objective was then to combat all forms of radiation that affected the physiological integrity of human beings: residues from the atomic industry, uses in radiological treatments, food preservation, X-rays from televisions, etc. Without succeeding in breaking the official and media silence on these health issues of radioactive pollution, however, it was actively involved in defining the nuclear problem, which became public knowledge in the early 1970s. Social movements relied on the knowledge produced by APRI to acquire legal and technical skills to manufacture and publicize the nuclear risk previously unknown to the public, to stimulate debate, and then to involve them in the dynamics of protest [CHA 15a]. As protests grew within each location threatened by the establishment of a nuclear power site, a collective mobilization developed. The problematization of the public nuclear problem was shifting toward the defense of democracy and, increasingly, toward the defense of the territory, a new unifying theme of social criticism. It was thus less and less understood by social movements through the conflict of scientific and technological expertise, while the scientific community publicly confirmed itself to be against the nuclear power program at a late stage, in 1975, with the Appel des 400. In the latter, scientists insisted on the uncertainties of low doses of artificial radioactivity on workers’ and populations’ health, while making the already existing anti-nuclear protestor invisible. They then generally stayed away from the oppositional dynamics of social movements, at the boundary of the latter, playing a role in producing counter-expertise sometimes

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mobilized to support and legitimize anti-nuclear action. Some of them created the Groupement des scientifiques pour l’information sur l’énergie nucléaire (GSIEN) in the same year. From then on, the territory emerged under the action of social movements, first as a means of publicizing the public problem of nuclear power while simultaneously participating in the process of framing the cause; then this spatialized integration in the local area rooted mobilizations in conflicts of places structured around the defense of a threatened territory identified with the constructed challenge; finally, this territorial inscription of mobilizations and its opposition dynamics within the public space upset the spatial and pyramidal institution of public problems. This homogenization of the nuclear problem was not complete since several definitions continued to coexist during this decade among the protesting dynamics. The dominant and stabilized definition of territorial defense was compatible with other complementary definitions, as long as it remained at the margin of the anti-nuclear argumentative repertoire. Less valued by social movements in their discursive practices, and therefore not very visible in the public space, this alternative definition in terms of public health continued to develop through the mobilization of doctors and scientists. In the wake of APRI and GSIEN, they regularly produced important literature documenting the dangers of radioactive contamination. For them, the latter were considered the main reason for opposing nuclear power. In this sense, they continued to view this public problem as a health risk mainly, including during the heightened publicity of nuclear power in the form of a democratic crisis. This literature then circulated widely within the anti-nuclear movement. By producing extensive documentation to popularize nuclear technology, these scientists critical of the nuclear power program, therefore, played a decisive role in the process of publicizing and discussing nuclear risk. However, this information remained highly technical and tended to render local conflicts invisible, thus assuming the role of counter-experts that they denounced at the beginning [TOP 07]. 4.3. Problematization and (re)appropriation of the public problem The early 1980s were marked by the gradual emergence of a (re)problematization of the public nuclear problem in terms of environmental health. In an anti-establishment complex, this (re)appearance was first driven by the Collectif pour une autre politique de l’énergie (CAPE) founded in spring 1979 on the fringes of the Coordination nationale antinucléaire

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(CNAN), which has brought together some 60 local committees since 1976. CAPE brought together several associations, political and trade union organizations – some of which (Confédération syndicale des familles, Confédération syndicale du cadre de vie, Union fédérale des consommateurs, etc.), maintained a certain distance from anti-nuclear protest dynamics. The mobilization of these new social actors contributed to the reformulation of the public nuclear problem. After the failure of several local mobilizations and their strategy of confronting the state, this new coalition sought to shift the boundaries of mobilization in an attempt to influence the upcoming presidential election: first, by initiating a national petition, relayed locally by pre-existing anti-nuclear collectives affiliated with the CNAN, which, with a change of name, took the opportunity to extend to new protest units. The petition’s text was explicit: there was no longer any question of calling for the nuclear power program to be halted as before, but for it to be suspended until a democratic debate on energy policy had been completed. This new formulation of the public problem disrupted its structure and paved the way for others to emerge from these militant words. Based on the definition work carried out by the GSIEN medical commission, APRI, the Association d’études et d’action pour la sauvegarde l’environnement (ANEASE), and Santé université nature (SUN), CAPE then launched a national campaign in the spring of 1980 to publicize the health risks of nuclear energy. By sending a questionnaire to all doctors within the territory, each local collective embarked on real investigative work, characteristic of activism on environmental health issues [AKR 10] but relatively new in the modalities instituted for collective anti-nuclear action. By assessing the reception and care capacities, as well as the information of the medical profession in terms of radiation protection, its objective was to make tangible the existence of a health problem and to make visible the threats to which the population was being exposed. In Savoie, the doctors contacted were happy to answer this survey by means of a four-page questionnaire, while very often taking care to maintain their distance with the commitment of lay investigators. In return, CAPE broadcast the findings, but did not obtain the expected results. Despite the Socialist Party’s accession to power in 1981 and its commitments, no referendum was held and no definitive freeze on the construction of power plants was decided. After a delay period of a few months, the nuclear power program continued at a steady pace. At the same time, institutional responsibilities were entrusted to the main actors displaying scientific criticism who seized this opportunity to try to challenge the nuclear power program within the

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“system,” without any further success, except that they contributed to limiting the margins of maneuvering in terms of protest action [TOP 13]. For its part, this first large-scale health-environmental mobilization in the French anti-nuclear landscape did not lead to a definitive bifurcation of the public nuclear problem. Several definitions of the latter continued to coexist within social movements over the same period, sometimes in the same place of conflict and with the same social actors. This was the case in Savoie. In the series of mobilization actions against uranium mining projects between 1978 and 1982, it was the defense of a territory threatened by the nuclear industry and the inevitable destruction of economic activities and mountain life that were strategically highlighted in the protests by the Réseau savoyard uranium (RSU). Environmental and health issues (the impact of radioactive pollution on human health and the quality of agricultural products) were secondary. Although stamped with the name RSU, this mobilization, its issues, and objectives were driven, supported, and defined by the same individuals who were simultaneously active in CAPE. The public problem of nuclear power, therefore, existed in various forms, not mutually exclusive, and which could be adjusted according to the tactical-strategic action regimes of social movements: the nature of the stakes of mobilization, the choices of identification in the public space, and the demands made [CHA 19]. Thus, always over the same period but during protest episodes located in other territories, it found itself problematized in a completely different way. In Chooz, for example, between 1979 and 1982, the mobilization against the nuclear power plant project met with the struggle of steel workers trying to save their jobs, threatened by the closure of their factory; a practical and unprecedented alliance was established and convergence was achieved on the common observation of dispossession and the feeling of betrayal. Health-environmental arguments were very limited. On the other hand, they (re)emerged in Golfech in the fall of 1981 with the involvement of the medical staff surrounding the future nuclear power plant. The decision to stop or resume its work was then taken after the government’s decision to temporarily suspend it a few months earlier. Local doctors, dentists, physiotherapists, and nurses were almost unanimously against nuclear power and made this known to the public in close collaboration with anti-nuclear activists. Faced with the political and economic arguments in favor and against the establishment of nuclear reactors, their objective was to problematize and publicize this public problem through its health issues in order to shift the boundaries and strategies of the instituted actors. To this end, they warned of the health

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consequences of the accumulation of artificial radioactivity and the exposure of the public to its low doses, in particular the increase in the number of cancers and the number of deaths in the vicinity of existing nuclear power installations. To be credible and audible in the public space, they mobilized existing scientific studies, such as the work of the United Nations Scientific Committee on the effects of ionizing radiation, the work of the United States Academy of Sciences, and epidemiological studies conducted by American doctors after the Three Mile Island accident in 1979, which revealed an increase in neonatal mortality in the vicinity of the plant in the months that followed. This mobilization did not go beyond the local level and did not succeed in reconfiguring over time the problematization of the controversy at Golfech, which continued to take place in the years that followed according to the same social logic. 4.4. Affirmation of collective action

problematization

and

displacement

of

In 1986, the Chernobyl accident unexpectedly occurred. Tragically fulfilling the prophecy of major risk, this disaster and its management by the public authorities in France made it possible to relaunch for a time the preexisting protest episodes, as in Golfech, and to stimulate new ones, as in Nogent-sur-Seine, where a nuclear power plant was under construction. Above all, it marked a more significant shift in the forms of collective antinuclear action with the development and structuring of an associative counter-expertise that became professional. Two independent laboratories were thus created: the Commission de recherche et d’information indépendantes sur la radioactivité (CRII-RAD) in Drôme and the Association pour le contrôle de la radioactivité dans l’Ouest (ACRO) in Normandy. In a period marked by a significant anti-nuclear backlash, these laboratories offered new resources to anti-nuclear activists who could thus renew their mode of action and communication in the public space. In Savoie, the latter paid attention to the details of the environment. They collected mushrooms from the forests which they then had analyzed by the CRII-RAD to measure their level of radioactivity in order to make visible their contamination with Cesium 137 and thus prove that the radioactive cloud did not “stop at the French border.” The aim of this mobilization was to raise awareness and then engage the public living in these same territories and thus broaden the mobilization. Gradually, the growing importance of this tactical repertoire in anti-nuclear info-communication practices was accompanied by the emergence of activism linked to expertise and a

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movement to professionalize a certain number of activists. Highly gifted with cultural capital, they established themselves as experts capable of creating a scientific demonstration and living economically from this activity [OLL 01]. This form of mobilization organized around health and environmental risks plunged activists back into investigative work seeking to reveal pollution and its effects confined to the margins of public space. To do this, they teamed up with actors from the scientific world and established collaborations with investigators who had become professionals. In 1988 in Nogent-sur-Seine, local anti-nuclear activists launched a study – which they called “radio-ecological” – around the area around the plant, and at the same time a subscription was taken to finance these analyses. With the help of the CRII-RAD and a professor of ecology, they themselves wished to specify the reference situation of radioactivity on behalf of the public’s right to information. The previous year, EDF had not wished to communicate their study, which led them to file an appeal with the Conseil d’Etat to request the annulment of the ministerial order authorizing the discharge of radioactive effluents from the plant. The results of their counter-investigation showed that the Nogent-sur-Seine region, as in Savoie, had suffered the consequences of Chernobyl. By acting in this way, anti-nuclear activists took on the dual role of whistleblowers and critics, without this configuration continuing [CHA 99]. This gradual shift in protest action was even more visible within the opposition to the SuperPhénix breeder reactor, with the creation in 1989 of a new transnational coalition, Européens contre SuperPhénix, ECS (Europeans versus SuperPhénix). As it developed, law and expertise emerged as a means of action of their own, becoming increasingly autonomous from the repertoire of the event. Anti-nuclear activists were mobilizing with and through these two tactical repertoires to bring legitimacy to the media staging of the protest, which was also increasingly present in the public space [CHA 15b]. In 1990, a European public subscription was launched to finance an independent analysis of radioactivity around the site in order to have tangible evidence to demonstrate the shortcomings of official expertise and to challenge them in court. In 1994, legal actions were initiated for the public invited to participate massively through the filing of complaints against X for “endangering the person” after the decision to restart the breeder reactor in August of the same year. Since 1995, around the nuclear sites of Nord-Contentin, local anti-nuclear activists and independent ACRO experts worked through multiple collective

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mobilizations to make the dangers of nuclear power visible through the prism of these health issues [CHA 98]. The public nuclear problem is explicitly constructed and defined in this way, in particular through the case of higher leukemia risks in the vicinity of the La Hague nuclear waste reprocessing plant. To do this, they employ formal methods (epidemiological statistics) and instruments to visualize the indistinguishable (Geiger counters) to convince journalists to publicize their investigative work. Their mobilization reveals that making information public does not automatically mean making it visible within the public space, even if the low media visibility obtained provides reasons to mobilize social actors who did not have any until then [LEM 08]. Thus, the publication of the results of an epidemiological survey allowed doctors in the Cherbourg region to question the validity of locally established scientific visualization devices for danger and led them to create the Association pour le registre des cancers de la Manche (ARCM). In 1997, a second study linking low levels of leukemia to environmental radiation exposure was published in a British scientific journal before being widely reported in the French national media and provoking a government reaction that appointed a commission to review the health consequences of the operation of the La Hague plant. At the same time, Greenpeace, with the support of ACRO and CRII-RAD, was actively challenging the plant’s operation by denouncing abnormal radioactivity in the vicinity of the plant’s discharge at sea. To resolve this situation, which they considered unacceptable, these associations turned to the media arena to challenge the monopoly of legitimate expertise rather than to the technocratic or scientific arena to which they were deprived access because of the action of the main actors of public problems in the nuclear field [BAI 01]. Mastering journalistic routines and having developed a capacity for scientific argumentation, they succeeded in using the public space and transforming the La Hague plant into a public problem in the form of an environmental and health scandal. Other collective mobilizations and (attempts) at health-environmental alerts took place during the same period and in different places of protest. In 1997, still in Nord-Contentin, residents of the hamlet of Gramaville themselves recorded an abnormal rate of cancer within their territory, but due to the lack of adequate equipment enabling ACRO to produce expertise to legitimize this epidemiological intuition, the warning quickly ran out of steam. The same year in Penly, a general practitioner living near the plant publicly denounced the existence of an abnormal rate of thyroid pathologies, supported by scientific studies. This time, the high media coverage and politicization led to the problem being pushed aside without any

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epidemiological studies being carried out or a new system for monitoring the effects of the environment on the health of the population being created as initially hoped [CHA 99]. On the other hand, in 1995, a proven contamination with cesium in the Vosges linked to the consumption of mushrooms led the public authorities to refine their systems for measuring artificial radioelements in the environment, even though this event remained confined to the media space. These mobilizations revealed that the mechanisms for defining the public problem took place by initiating a publicity process, but they could also be based on mechanisms that maintain and strengthen its containment away from the public space – and sometimes even both during the same mobilization sequence. These cross-dynamics of publicizing and confining the problem show that the logic of building a definitional consensus is more complex than it seems. Thus, what may seem obvious to previous mobilizations is not – a definition of the problem in terms of environmental health is not necessarily more accepted and taken into account by public authorities if it concerns thyroid pathologies that are nevertheless associated with the effects of radiation with Chernobyl or if it is carried out by actors who are more socially competent to support a health warning than others. 4.5. Definitional issues linked to advertising and oppositional dynamics During the 1980s, therefore, some of the dynamics of protest tended to gradually transform the nuclear power controversy from indivisible conflicts between front-line supporters and opponents of nuclear power into divisible conflicts organized around the health and environmental risks posed by this energy [BAR 05]. Made possible by the appropriation of the public nuclear problem by social actors hitherto unheard of or visible within the antinuclear space, this problematization did not systematically reproduce the opposition instituted between “pro” and “anti” that had structured the controversy since the 1970s. Nevertheless, the observable definitional processes were not similar to new logic within the anti-nuclear protest space, but rather to renewed logic on which the definitional struggles of the public nuclear problem were continuing between social movements. Thus, the increasing shaping of health-environmental protest claimed in legal language could not obscure the fact that the judicial arena had been used since the early 1970s as support for emerging mobilizations [CHA 18]. It did not, therefore, correspond to a significant transformation of the tactical repertoire of the anti-nuclear movement, but rather showed the renewal of an old

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mobilization strategy that was being taken up by certain social actors seeking to redefine the public nuclear problem by engaging in requalified public arenas. What was changing through these attempts to shift nuclear power toward a definition in terms of environmental health was a more obvious disconnection than in the past between the targets of legal proceedings initiated and the dynamics of protest held by local anti-nuclear coalitions within contemporary oppositional public spaces. This change was particularly noticeable in the legal activism led by the Réseau sortir du nucléaire (RSN) around the themes of environmental and health pollution. Thus, the health-environmental problematization of mobilizations was spreading within the anti-nuclear protest space. These mobilizations were now part of the actors’ intentions and the tactical repertoires of social movements, as were other forms of collective action on which activists relied to shape strategies, construct discourses and achieve protest performance [CHA 19]. This resource was then (re)mobilized in older mobilizations to try to renew and relaunch them, like in spring 1998 at Golfech. Near this power plant, anti-nuclear activists (re)launched an investigation to collect data on leukemia and thyroid diseases from local doctors in order to send them to the Ministry of Health so that the public authorities could in turn initiate an epidemiological study around the site. Health-environment thematization was also mobilized without undertaking prior investigation work per se, but by pragmatic opportunity through discursive practices in order to initiate a publicity process in the face of adversaries seeking discretion and containment away from the public space. Articulated with the joint production of media and protest events with journalists, this approach could be observed in the sequence of mobilization against the transport of Italian radioactive waste in Savoie between 2007 and 2012 [CHA 15b]. Although different in some respects, it was also different to the one that opened up in 2011 against the Installation de condition et d’entreposage de déchets activés (ICEDA) project at the Bugey nuclear site [CHA 18]. What was common to these two sequences of localized mobilization is that the choice to switch from nuclear definition to a definition in terms of environmental health was linked to the modalities of the previous processing of the problem by social movements. This articulation depended as much on the availability of resources at the time, the understanding of cyclical variations and their analysis, a more or less rational “cost–benefit” calculation, the multiplicity of the dynamics of individual commitments, and the way in which these different elements were perceived, as on the meaning given to them in situations, beliefs, and symbolic issues that were then at stake.

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At the macro-sociological level of the dispute, the slow change in the public problem of nuclear power toward a definition in terms of environmental health was accompanied by a structuring and professionalization movement, first with the ECS and then with the RSN at the instigation of a marginal group from the anti-nuclear movement [CHA 16]. When it was created in 1997, this new national interorganizational alliance was the scene of a showdown over several months between these different potential components to define its orientation, identity, and collective action modalities. During this coalition work, away from places visible to the public, there were uncertainties of meaning, power relations, and disputes relating to the definitional issues of the public nuclear problem and its contestation, the mutual importance taken by the various definitions of which it was composed, and their prioritization. Different interpretations clashed in this (re)qualification work and tended, as they clashed, to reinforce their mutual exclusion rather than to accommodate each other. Defined according to multiple and sometimes conflicting priorities, they were finally the subject of different arbitrations and compromises. Several anti-nuclear coalitions finally refused to participate, preferring to remain on the fringes of the RSN to publicize their own definition of the public nuclear problem and the claims related to it. The main aim was to prevent their info-communication practices from being channeled into a socioscientific problem limited to the logic of counterexpertise on the assessment of economic and health-environmental risks. For them, the very existence of the latter, intrinsically linked to the activity of industrial production of nuclear power, imposed, on the contrary, a de facto confrontation with their opponents on the social choices made by the State’s energy policy. This definitional struggle revealed the conflict caused by the simultaneous existence of different possible definitions of the same public nuclear problem in terms of environmental health. 4.6. Conclusion These “new territories,” invested in over a long period of time by the anti-nuclear movement, were part of the ongoing transformations in the health sector: first, with regard to the extension of health issues to environmental issues simultaneously with their problematization as public issues; and second, by placing at the heart of these definitional processes the societal issues of expertise and democracy. However, these processes remained ambivalent. They were tirelessly the object of struggles within social movements without a degree of homogeneity and agreement ever

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being definitively reached on the definition that should be given to the situation. It was indeed difficult for many activists to prioritize these definitions ad vitam aeternam in relation to each other and to consider such a definition as one that should become mutually exclusive. This vagueness about health and environmental risks also allowed the anti-nuclear movement to regularly broaden the public protest, without succeeding in stabilizing it. From the end of the 1990s onward, it has thus moved closer to other social actors who had until then remained mostly on the fringes of mobilizations that explicitly challenged the nuclear power program. This extension of the protest space to the prism of health risks could first be observed in the territorialized oppositions to projects to create very high voltage (VHT) lines to ensure the circulation of energy produced by the nuclear power industry [BOY 09]. It was then used in meetings with collective mobilizations to discuss occupational health issues previously raised by employees who were victims of the nuclear power industry, particularly subcontracting work and its effects on working conditions [GHI 17]. Although the anti-nuclear movement is not yet able to forge lasting alliances with trade unions beyond a few localized and temporalized dynamics [CHA 14b], these common mobilization times are shifting the established boundaries of the health sector. They make it possible to link and cross-reference health issues with those of occupational health, the environment, and environmental health. The most salient example of this shaping was the joint mobilization of anti-nuclear activists with a marginal group of rail workers against the transport of radioactive materials that cross France every day [CHA 15b]. During this mobilization sequence, there was a momentary sharing of the same definition of the public problem and its stakes: they possessed similar interpretations and normative orientations. Indeed, the health risks to which railway workers are concretely exposed in their professional activity are considered inseparable from those weighing (particularly in the event of a rail accident) on the populations and on the environment, and vice versa. In addition, the existence of this plural health problem and its modalities of (non-)management by public authorities (re)question, from the broader field of health, the democratic dimension of the French political system and its possible transformations. The anti-nuclear movement also participates, certainly to a lesser extent, in the “struggles for visibility” led by certain social actors in search of intelligibility and legitimacy in the public space [VOI 05]. They are attempting to transform the hierarchical categories of public attention to the

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problem of nuclear power in order to bring their definition of the latter into existence. This participation essentially involves making these “new mobilizations” visible to the anti-nuclear public. For example, that of veterans of French nuclear tests engaged in a struggle to recognize their status as victims [BAR 17] or those of the inhabitants of Niger wishing for the radioactive contamination of their territory to be recognized by Areva [TOP 13], and uranium mine workers claiming a more protective status to deal with this exposure [HEC 16]. This visibility within the protest space does not then translate into a displacement of the protest action: the antinuclear movement does not take it up in the construction of its infocommunication practices in such a way that they remain absent from the demands made in the public space. Similarly, other mobilizations, although specifically problematic in terms of environmental health, remain outside the public attention of social movements. This is the case of the mobilization around thyroid conditions seen in the Corsican people, which points to the link between an increase in the incidence of a disease and environmental pollution linked to artificial radioactivity [CHA 17b]. Similarly, links are being established with other actors but essentially to publicize the mobilization of the anti-nuclear public: those that had experienced French nuclear tests engaged in a struggle to recognize their victim status [BAR 17], as well as with the inhabitants of Niger acting to have their territory of Areva recognized as having been radioactively contaminated. Furthermore, uranium miners have worked to have their exposure made visible at their own risk, in order to achieve a protection status. 4.7. References [AKR 10] AKRICH M., BARTHE Y., REMY C. (eds), Sur la piste environnementale. Menaces sanitaires et mobilisations profanes, Presses des Mines, Paris, 2010. [BAI 01] BAISNEE O., “Publiciser le risque nucléaire. La polémique autour de la conduite de rejets en mer de l’usine de La Hague”, Politix, vol. 14, no. 54, pp. 157–181, 2001. [BAR 05] BARTHE Y., Le pouvoir d’indécision. La mise en politique des déchets nucléaires, Economica, Paris, 2005. [BAR 17] BARTHE Y., Les retombées du passé. Le paradoxe de la victime, Le Seuil, Paris, 2017.

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[BOY 09] BOY D., BRUGIDOU M. (eds), Le débat public, un risque démocratique? L’exemple de la mobilisation autour d’une ligne à très haute tension, Lavoisier, Paris, 2009. [CHA 98] CHATEAURAYNAUD F., “La sociologie pragmatique à l’épreuve des risques. Exercice de crise sur le dossier nucléaire”, Politix, vol. 11, no. 44, pp. 76–108, 1998. [CHA 99] CHATEAURAYNAUD F., TORNY D., Les sombres précurseurs. Une sociologie pragmatique de l’alerte et du risque, Editions de l’EHESS, Paris, 1999. [CHA 14a] CHAMBRU M., “L’espace public à l’épreuve du phénomène antinucléaire en France (1962–2012)”, ESSACHESS – Journal for Communication Studies, vol. 7, no. 13, pp. 33–43, 2014. [CHA 14b] CHAMBRU M., “L’évolution des dissonances du syndicalisme français aux prises avec l’énergie électronucléaire et sa critique sociale”, Mouvements, vol. 4, no. 80, pp. 66–77, 2014. [CHA 15a] CHAMBRU M., “La critique du régime technopolitique des sciences par la mouvance antinucléaire: un éclairage sur le concept d’espace public oppositionnel”, Les enjeux de l’information et de la communication, vol. 3A, no. 16, pp. 29–38, 2015. [CHA 15b] CHAMBRU M., “L’engagement protéiforme des militants et des journalistes dans les mobilisations informationnelles antinucléaires”, Sciences de la Société, no. 94, pp. 65–82, 2015. [CHA 17a] CHAMBRU M., “Les temporalités des espaces publics oppositionnels: mouvements sociaux et enquête multi-située”, in DOMENGET J.-C., MIÈGE B., PELISSIER N. (eds), Temps et temporalités en information-communication: des concepts aux méthodes, Société française des sciences de l’information et de la communication, France, pp. 75–84, 2017. [CHA 17b] CHATEAURAYNAUD F., DEBAZ J., Aux bords de l’irréversible. Sociologie pragmatique des transformations, Editions Pétra, Paris, 2017. [CHA 18] CHAMBRU M., “La publicisation du risque nucléaire par les usages protestataires du droit”, Sciences de la Société, no. 100, pp. 79–82, 2018. [CHA 19] CHAMBRU M., “Les pratiques info-communicationnelles de la mouvance antinucléaire. Acteurs, formes et enjeux de l’action collective”, in CARLINO V., STEI M. (eds), Les paroles militantes dans les controverses environnementales. Construction, légitimations, limites, PUN, pp. 307–318, Nancy, 2019. [FAG 79] FAGNAN F., “Acceptabilité des risques et enjeux sociaux, le cas des normes radiologiques”, in FAGNAN F., NICOLON A. (eds), Nucléopolis, matériaux pour l’analyse d’une société nucléaire, Presses universités de Grenoble, France, pp. 375–481, 1979. [FOA 12] FOASSO C., Atomes sous surveillance: une histoire de la sûreté nucléaire en France, Peter Lang Edition, Brussels, 2012.

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[GHI 17] GHIS MALFILATRE M.-A., “La CGT face au problème de la sous-traitance nucléaire à EDF. Le cas de mobilisation de Chinon (1987–1997)”, Sociologie du travail, vol. 59, no. 1, available at: https://journals.openedition.org/sdt/570, 2017. [GIL 12] GILBERT C., HENRY H., “La définition des problèmes publics: entre publicité et discrétion”, Revue française de Sociologie, vol. 53, no. 1, pp. 35–59, 2012. [HEC 16] HECHT G., Uranium africain. Une histoire globale, Le Seuil, Paris, 2016. [LEM 08] LEMIEUX C., “Rendre visibles les dangers du nucléaire. Une contribution à la sociologie de la mobilisation”, in LAHIRE B. (ed.), La cognition au prisme des sciences sociales, Éditions des archives contemporaines, Paris, pp. 131–159, 2008. [MAR 15] MARTIQUET Y., L’autonomie du droit nucléaire: contribution à l’étude de la nature et des caractères d’un droit nouveau, Université de Nîmes, Nîmes, 2015. [MAT 02] MATHIEU L., “Rapport au politique, dimensions cognitives et perspectives pragmatiques dans l’analyse des mouvements sociaux”, Revue française de science politique, vol. 52, no. 1, pp. 75–100, 2002. [MAT 12] MATHIEU L., L’espace des mouvements sociaux, Editions du Croquant, Bellecombes-en-Bauges, 2012. [OLL 01] OLLITRAULT S., “Les écologistes français, des experts en action”, Revue française de science politique, vol. 51, nos 1–2, pp. 105–130, 2001. [TOP 07] TOPÇU S., “Les physiciens dans le mouvement antinucléaire: entre science, expertise et politique”, Cahiers d’histoire. Revue d’histoire critique, no. 102, pp. 89–108, 2007. [TOP 13] TOPÇU S., La France nucléaire. L’art de gouverner une technologie contestée, Le Seuil, Paris, 2013. [VOI 05] VOIROL O., “Les luttes pour la visibilité. Esquisse d’une problématique”, Réseaux, vol. 23, nos 129–130, pp. 89–121, 2005.

5 Public Health Controversies: The Scattering of Arenas and Politicization. The Case of Vaccination in France during the 2010s

5.1. Introduction: vaccination and the politicization of public health Vaccine controversies are a significant source of tension between health institutions, biomedical institutions, political institutions, and society. They are a place to observe the ambivalences that constitute contemporary public health: between “population-based” logic and public order on the one hand, and the value of the individual’s responsibility for their health and the demand for experiential and lay expertise on the other [BOU 18]. As objects of confrontations, vaccines and vaccination are representative of the politicization of public health, which is part of significant transformations in the health field. It is this setting of public debates on political decisions and public debates on scientific knowledge [DOD 99] that we propose to consider here as a new health territory. From the “failure” of the H1N1 pandemic influenza vaccination campaign in 20101 to the announcement by the Health Minister of Macron’s                                         Chapter written by Caroline OLLIVIER-YANIV. 1 Authenticated by parliamentary reports in 2010 and 2011. La grippe H1N1: retour sur la première pandémie du XXIème siècle, report by the inquiry commission on the role of pharmaceutical companies in the Government’s management of influenza A (H1N1), No. 685, Journal Officiel, July 30, 2010; La gestion d’une crise sanitaire: la pandémie de

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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first government in the fall of 2017 regarding the extension of mandatory vaccinations, what has become of the supposed authoritative discourses – political, institutional, scientific and medical – on vaccination and vaccines? Contrary to what a traveler unaware of the controversies that have regularly stirred up “Pasteur’s country” might think, vaccine controversies have multiplied, accumulated, and been intertwined throughout this decade. Considering that a controversy is a “polarized, argued, repeated and public discursive confrontation” [REN 16], as well as a “triadic conflict [i.e. composed of both sides of the conflict and the public],” sometimes the peer public, sometimes the lay or non-expert general public [LEM 07], the phenomenon in question is characterized by its complexity. For example, the online petition, initiated in 2015 by Henri Joyeux, a former oncologist, promoter of so-called “natural” medicines and entrepreneur of the antivaccine cause in France, is supported by a European deputy belonging to the Europe Ecologie Les Verts (EELV), a group specializing in environmental health issues2, but not by an association of people who consider themselves suffering from a disease induced by aluminum used as an adjuvant in vaccines (association d’entraide aux malades de myofasciite à macrophage, E3M) [OLL 17b]. Finally, the announcement of the extension of the number of mandatory vaccines from 3 to 11 in 2017 appeared to be the result of a political desire made possible by a combination of several factors: a minister who was earlier a professor of medicine, with significant experience in the French health system and a member of a newly appointed government – much more than the expression of a consensus constructed through public consultation conducted a few months previously and which gave rise to controversy. When it comes to vaccination, everything happens as if the discourse is partial and fragile. To shed light on this observation, this chapter proposes to give an important role to the notion of the arena and to the scattering and selection processes linked to discourses and actors between heterogeneous arenas. As a material or immaterial place for confrontation, an arena is characterized by specific formal and communicative constraints, variable social visibility, its own temporality, and inequalities of access for individuals [GUS 09], [GUS 12]. In this context, the theory that we expose presents two                                         grippe A (H1N1), report by the Social Affairs Committee on the Court of Auditors’ study on the use of funds mobilized to combat the A (H1N1) influenza pandemic, February 1, 2011. 2 Co-founder of the CRIIRAD, Commission de recherche et d’information indépendantes sur la radioactivité, in 1986.

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components. First, it is by objectifying the scattering and selection – in the sense of adapting them to the formal and interactive constraints of each arena3 – of discourses in heterogeneous arenas that we can grasp the plurality of controversies and what happens to institutional discourses. The theory of the scattering-selection of discourses in heterogeneous arenas thus makes it possible to account for the struggles for meaning that are specific to each of them [DAL 16]. In this case, it is a question of grasping the politicization of immunization, as well as the persistent nature of the challenges to the discourses of institutional and a priori hegemonic actors, especially when they do not develop in the most visible and public arenas. It is also about identifying the displacement – or non-displacement – of controversies between arenas in order to grasp not only the procedural dimension of any controversy but also what a change of arena confers in terms of power relations: selection of discourses, difference in social visibility, and, in doing so, transformations in power relationships between individuals or groups. Each of these two components is more particularly developed in the two parts of this chapter. On a theoretical level, this issue combines the contributions of the symbolic approach of the construction of public problems [CEF 09], [CEF 16], [GUS 09], [HIL 88] and the analysis of political and scientific controversies [REN 16]. It is thus a question of grasping the procedural and changing dimension of polarized confrontations that deal with a previously institutionalized subject, public policy. This theoretical framework also takes into consideration from the outset the existence of power relationships between actors or groups of actors, the latter being indexed on their social properties and their access, or lack thereof, to the various arenas. For example, institutional and scientific actors occupy a hegemonic position in the news media arena, including when it comes to debating a controversy that initially spread via digital social networks, while they are generally unheard or invisible in digital arenas. However, it happens that the place of these institutional actors is questioned by subordinate actors in these highly regulated and institutionalized arenas. This reflection concerns the period 2012–2018, which corresponds to the institutional sequence of the “national program for the improvement of vaccination policy,” on the future of vaccination obligations in France. In the early part of the 2010s, public health institutions acknowledged what was considered a public mistrust of vaccines, seen as a consequence of the failure                                         3 In a similar way to how an organism adapts, or not, to a new living environment.

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of the 2009 influenza vaccination campaign [WAR 15a]. During this period, significant discourses of institutional work (reports, notes, political speeches) were identified, as well as discourses of some actors aiming to influence the institutional political game or to take advantage of the revision of public vaccination policy to promote an ideological cause beyond health issues. These actors were heterogeneous in terms of social properties and biomedical skills, as well as in terms of access to public arenas and institutionalization. The following typology can be established: scientists (including university professors in hospitals or MD/PhD professors), medical professionals (not carrying out research), political professionals (including parliamentarians), representatives of patient associations, anti-vaccine activists, representatives of the pharmaceutical industry, and journalists. A methodology of sociodiscursive analysis has been adopted, taking into account the social characteristics of the actors involved, the themes and arguments they developed, as well as the arenas in which these discourses took place4. 5.2. Anamnesis of vaccine controversies: a question of arenas Contemporary controversies over vaccines or vaccination have a history and are part of a collective memory [BER 04]. Vaccines, powerful tools of the Western medical clinic against highly lethal human and animal infectious diseases, have been the subject of controversy throughout the process of                                         4 The corpora that have been compiled are the following: institutional discourses (opinions, reports, political speeches), media discourses based on the Europresse database within three periods (petition initiated by H. Joyeux, delivery of the Hurel report, progress of the national consultation on vaccination, vote on the extension of vaccination obligations), Doctissimo discussion forum on vaccination (year 2015), websites of patient or victim associations (E3M, REVABH) and the text from the petition initiated by H. Joyeux and the Institut pour la protection de la santé naturelle. Ten interviews were conducted in 2016–2017 with controversial stakeholders: four PQN journalists, a president of a patient association, a pharmaceutical industry spokesperson, three communication officers from the Ministry of Health, and one member of parliament. Observations were also made at a meeting organized by the Association des journalistes scientifiques (AJSPI) in the Senate on October 25, 2016 and at the press conference organized by the Institut pour la protection de la santé naturelle with Henri Joyeux and Luc Montagnier on November 6, 2017 at the Théâtre des Mathurins in Paris. Many informal discussions were also held with MD/PhD professors involved in the controversy on aluminum adjuvants, based at the Université Paris-Est Créteil, as well as the author of this text. Finally, the empirical data collected and analyzed are not well reflected in this chapter, due to the size constraints.

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constructing vaccination as an instrument of public hygiene [REN 99] and more generally, of “bio-politics” [FOU 04]. The history of vaccination is thus characterized not only by scientific, professional, and political debates but also by resistance against vaccine processes and products (the development of which has been complex and erratic), their administration methods, or vaccine obligations. These debates have been well identified in work that “brings together myth and historical truth in the act of vaccines” [MOU 96]. In the sociohistory of techniques and innovation, vaccination is a paradigmatic case of the denaturalization of medical and technological progress [FRE 12]. The doubts and disputes that constitute the progressive imposition of “vaccine power,” particularly in terms of human experimentation, within the discreet arena created by the medical professional community, are thus brought to light. The importance of underestimated devices in the public history of medicine is also highlighted, such as the graphic work of differentiating between false and true vaccination, both trivial – because it is not strictly medical – and yet decisive for authenticating the clinical definition of vaccination. The contemporary situation is characterized by the development of vaccine controversies in heterogeneous and, for the most part, watertight arenas. My analysis of the parliamentary report on vaccination policy published in 2016 highlighted its “polyphonic dimension.” This report presented “traces of significant prohibitions on the recognition of contradictory, divided and divisive positions, or the attribution of antagonistic responsibilities on vaccination policy and/or vaccines” [OLL 17a]. Based on hearings of representatives of civil society (patient or user associations) and representatives of the pharmaceutical industry and thus not restricted to the usual “qualified personalities,” scientific, medical, and institutional, the parliamentary report distinguished itself from the opinions and reports that had preceded it by mirroring, if not making them heard, actors whose antagonisms were seen in separate arenas. Vaccine controversies can thus be analyzed from the perspective of the arenas in which they occur. First, there are controversies about specific vaccines (against hepatitis B, papillomavirus, measles, etc.): they are based on the observation of rare intolerances – the effects described as “undesirable” in medical jargon – or on the publication of false scientific results. In particular, there is the alleged link between the measles vaccine and autism, erroneously established in 1998 by an article published in the prestigious journal The Lancet. Its refutation, by several scientifically

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validated studies and following a withdrawal by the journal, does not prevent this theory from continuing to spread. Andrew Wakefield, the scientist behind the controversy, now presents himself as a whistleblower: he made a documentary, “Vaxxed: From Cover-Up to Catastrophe,” developing the idea that the US administration had hidden data showing that MMR vaccination increases the risk of autism. This media format, more accessible to the general public than scientific discussions and refutations, maintains and reactivates the controversy over measles vaccine risks in diversified and public arenas: it is available on the Internet, it is regularly projected worldwide, and, in the online discourses of leading French anti-vaccine activists, its existence and dissemination is based on a conspiracy to ban Wakefield from the scientific community due to the occult influence of measles vaccine manufacturers on public health authorities. For other controversial vaccines, even when accidents are rare and no causal relationship can be scientifically validated, questions or denunciations of the risks related to a vaccine take on a disproportionate importance in relation to the overall collective benefit. This gap is partly linked to the biosocial specificities of the vaccine. For a prevention tool to make a healthy person sick seems inconceivable at the individual level, especially if it is a child, in a context where scientific innovations are generally understood in terms of risk perception and “belief in the occurrence of possible damage” [SET 14]. It is also linked to the expression and publicization, in more or less deregulated and moderate digital arenas – social networks (Facebook, Twitter), digital platforms (YouTube), or discussion forums (Doctissimo) – of (rational) questions and (emotional) concerns about the proven or undocumented nature of vaccine risks in a context perceived as marked by not only uncertainty in knowledge but also by individualized and very emotional testimonies on localized side effects (often testimonies from women or parents about their baby). Institutional and scientific discourse, particularly by health agencies, has long been totally absent from digital arenas: the implementation of a community management operation to explain the effectiveness of the measles vaccine and the rumor-like nature of the risk of autism, in 2011 and 2012, was late. It has proved problematic, given the difficulty of controlling the diffusion of institutional discourse on social networks from both a political point of view and a medical point of view [OLL 15]. The reminder of what epidemiological experts call the “benefits of vaccination,” i.e., the disappearance of deadly or disabling diseases, is the basis for the routine rational argumentation of scientists or media experts when they express themselves in the mainstream news media where they encounter little contradiction. On the other hand, these arguments

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are relatively invisible in digital arenas: they are absent from social networks, and when they appear on institutional websites, it is as postulates of public communication whose main objective is to recall, in a procedural and injunctive way, the rules of the vaccination schedule. There are always controversies on vaccination obligations, which are significant in terms of ambivalence in public health in general. The effectiveness of most vaccines depends on the multiplication of individual acts that are too complex to force in liberal democratic regimes. During the period under review, two controversies over compulsory vaccination took place in separate arenas. The first concerns the obligation to vaccinate versus the defense of individual freedoms. It is highly polarized since it generally involved opponents of the principle of vaccination as such. Even if this controversy did not unfold in isolation during the period of interest to us, the defense of individual freedoms is one of the arguments used in Henri Joyeux’s discourses, particularly in the text from the May 2015 petition initially posted on the website of an association promoting alternative therapies – the Institut pour la protection de la santé naturelle. Also and above all, the phenomenon of individual resistance to vaccination obligation is recognized in reports and institutional opinions, based on the results of opinion surveys and the use of history, while ignoring the words of actors qualified as “antivax.” They are thus denied, but rarely contradicted or disqualified on the basis of what would be an institutional counter-argument. The second controversy concerns the obligation versus the recommendation of vaccination. In institutional reports and in the health doxa, the coexistence of mandatory and recommended vaccines is considered a factor of complexity, misunderstanding by individuals, and as a result of risk to the success of public vaccination policy in a context of distrust. This topos was thus constructed as the central issue of the French General Directorate of Health’s “national program for improving vaccination policy” in 2012. While this text does not explicitly show internal controversies within the institutions of the French health system, our analysis of other institutional textual productions has shown that the answer to the question of the choice between recommended and mandatory vaccines is the subject of divergent answers in the confined arenas of public action [OLL 17a]. This controversy can be described as discreet, in the sense that it is not publicized and very moderate. It also contributes to making other difficulties in the functioning of the French health system very secondary, if not invisible, in the mass of institutional texts: the lack of control over the availability of products containing compulsory vaccines, and internal debates

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in the medical world on the reform of the European pharmacovigilance policy. Experts from health agencies, parliamentarians, and scientific or medical learned societies were involved, each basing their arguments on diversified skills and instruments: opinion surveys, interviews with qualified personalities, comparison with other European countries, monitoring of vaccine coverage rates, and arguments from scientific authorities highlighting the consubstantiality of resistance to vaccination obligations. This discreet controversy is highlighted in the parliamentary report, which explains the difficulties encountered in implementing an obligation policy, in terms of the unavailability of the vaccine product containing the three compulsory strains in particular. It thus partly underpins the recommendation to use public debate to try to build consensus among the different stakeholders identified by the report. The controversy over obligation versus recommendation was rekindled in the arena created by the general information media when the French Minister of Health officially announced the extension of vaccination obligations in fall 2017. Publicity was the work of a professional medical organization, the Collège national des généralistes enseignants. Through forums and interviews, the president and spokesperson of this professional society criticized this top-down obligation for a distrustful medical procedure and developed the argument that general practitioners, whose opinion studies show proximity to patients, were the best placed actors to maintain good coverage for all recommended vaccines. Such a corporatist argument is not unrelated to other discrete controversies in the mysteries of public health, which regularly pit practitioners’ representatives against political and administrative leaders: for example, in the context of negotiations on consultation fees or the defense of the monopoly of vaccination acts by doctors. The third set of controversies concerns the articulation between scientific controversies and controversies “on the circulation of knowledge” [JEA 98]. Two themes arose during the period under consideration: that of “adverse reactions” induced by certain vaccines (already mentioned earlier) and that of the toxicity of aluminum adjuvants in vaccine products. In research arenas (congresses, seminars, etc.), scientific controversies are supposed to be resolved on the basis of shared principles in terms of the validity of experiments and the regulation of the modalities for presenting and discussing results. However, the question of the role of aluminum adjuvants, which has appeared to have been settled in the scientific arena for some 20 years, was the subject of controversy during the period in question in

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semipublic and public arenas: due to the activism of the E3M association in the public space and in the information media in favor of replacing aluminum by calcium phosphate, and also due to the editorial5 and political6 activities of the scientist who initiated the work on aluminum adjuvants, which allowed its media coverage in the scientific and investigative sections of the general information media7. In this context, it was not only the scientific theories of R. Gherardi and his team that became controversial, but above all, their methods of publication and multiple reprises in media discourses (even if it was in the form of questions and not pure and simple support), in the petition initiated by H. Joyeux, on the Internet and social networks. For public health and scientific actors, the responsibility of journalists who relayed the questioning of aluminum adjuvants thus appeared questionable and strongly criticized: they were accused of contributing to the dissemination of falsified knowledge outside digital arenas [WAR 15b]. The lack of scientific and medical culture of individuals, and their irrationality were also publicly challenged by experts who seemed helpless in the face of the discovery that their position and their discourse did not immediately generate authority in all arenas. Finally, the period studied was also strongly marked by the sustainability of the controversy on the relations between political actors, scientific actors, and the pharmaceutical industry. The denunciation of the lack of independence, or even the influence of laboratories on political actors and on scientific and pharmacological experts, was generally activated not only by anti-vaccine activists but also by spokespeople for associations and elected representatives of parties located to the left of the French political scene. Scientific actors responded by systematically making their “links of interest” public. This was a controversial case in which actors with different logic and objectives developed a similar argument. EELV MP Michèle Rivasi’s call to sign the petition initiated by the fallacious whistleblower Henri Joyeux appeared at first sight unorthodox if we compare their global ideological positions: on the one hand, a female professor of biology, a former socialist                                         5 Author of the book Toxic Story. Published by Actes Sud in 2016 and presented as “a scientific investigation,” this testimony constitutes a narrative and a denunciation of the refusal of the scientific community and health authorities to question what the researcher considers to be the dogma of aluminum adjuvants. 6 Supported by a few local elected officials or communist parliamentarians from the Val-deMarne area, where its university hospital is located. 7 See in particular S. Foucart’s articles in Le Monde: “Vaccins, l’aluminium est-il néfaste?” (November 8, 2012), “La vaccination au cœur d’un thriller scientifique” (October 24, 2016).

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turned ecologist, and on the other hand, a former cancer specialist, author of successful books on nutrition as an alternative therapy, and long-term president of the very conservative association Familles de France. However, the arguments on vaccination of these two actors presented common points that brought them closer to a populist position [ROU 19]: criticism of the political, economic, and health elites, with a more or less strong link with conspiracy, questioning of scientific reasoning and highlighting the ability of individuals to know what is good for them. This controversy was particularly significant in the politicization of vaccination, in the ideological sense of the term, initially in discreet and even oppositional arenas. Three types of arenas emerged from this analysis of vaccine controversies: institutionalized discreet arenas, institutionalized public arenas, and deregulated semipublic arenas. First, discreet and confined arenas, in which discussions are governed by rules that are explained and elaborated by the actors participating in them by virtue of their competences and that are strictly regulated access modalities: this concerns in particular the scientific arena, in which controversies are a matter of dispute, as well as institutional mysteries, in which confrontations are strongly modulated. Lobbying, for economic actors in the pharmaceutical industry, and advocacy, for certain associative actors, can thus be considered as modalities for access to discreet institutional arenas. Institutionalized public arenas are made up of the news media, whose journalistic sources are institutional actors but in which the media capital of individuals or the importance of online controversy can induce the treatment of a subject. Finally, deregulated semipublic arenas are essentially digital arenas. Their accessibility is more important since their regulation is much less constrained. However, becoming visible depends on specific formal communication constraints [JUL 15], which operate as mechanisms for selecting discourses and social actors. 5.3. Scattering of controversies in arenas, an operator of politicization The second part of this chapter is devoted to the phenomenon of the scattering-selection of controversies. It deals with the conditions under which a controversy can be moved from one arena to another, and with the proposition that this shift constitutes an operator of conflict, the transformation of power relations between actors, and, more generally, politicization.

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The first phenomenon examined concerns the scattering from discreet and regulated arenas to public institutional arenas: we formulate the hypothesis that the publication of discreet controversies – institutional or based on strong, biomedical, or administrative expertise – allows the participation of non-expert or subordinate actors and generates heated confrontation and power relations. The shift in the controversy over the toxicity of aluminum adjuvants is a paradigmatic case of this type of scattering action. The scientific dispute began at the end of the 1990s with the publication by the medical journal The Lancet of an article drawing a causal relation between the persistence of aluminum components present in vaccines in macrophage cells and chronic fatigue syndrome, which constitutes a pathology described as “macrophage myofasciitis.” The thesis was discussed and disproved: it led to the conclusion that no causal link can be identified. Twenty years later, the topic of the toxicity of aluminum adjuvants in vaccines regularly appears as the subject of controversy in semipublic or public arenas. It is supported by associations whose members consider that they are the victims of vaccination (E3M first, but also the REVAV association – a network of victims of vaccine accidents, which initially only concerned the hepatitis B vaccine), through their communication and activism operations. It is also broadcast by alternative media or pretending to be8, mainly specialized on well-being and health or more generalist in nature. It is the purpose of a book by Gherardi, published in the small specialized collection on health by the French publishing house Actes Sud9, at the time when institutional consultation on vaccination obligations began. By the narrative of his scientific career, intertwined with personal reflections, the researcher proposes a polemical popularization of his work on aluminum adjuvants: he developed the theory that it was first and foremost because these adjuvants were widely used in the production of vaccine products and under the influence of the pharmaceutical industries that the health authorities refused to finance additional work on this topic. The change of arena is consubstantial with the transformation of the content of the controversy. In public arenas, the discussion focuses less                                         8 While constituting a complex whole, the sector and the “free media” movement are united around a critique of the dominant media and the defense of non-professional and noncapitalist journalism (FER, 2016). However, some information sites on well-being and alternative medicines do not meet the latter criterion, given the market for products and books (including those of H. Joyeux) that are significant for therapies described as “natural” and “alternative.” 9 Toxic story, 2016.

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(although this aspect has not completely disappeared) on the validity of scientific work than on the relationships between the dominant public actors – health and science – and the pharmaceutical industry, as well as on an interpretation and on a reframing of the epidemiological paradigm of the “risk-benefit ratio” at an individual level. The change of arena is also inseparable from the transformations of places and the power relationships between the actors. As the main social entrepreneur for implicating aluminum adjuvants – without being opposed to vaccines as he systematically explains – Gherardi did not present all the attributes of the scientific authority in vaccine matters: being a university hospital practitioner, neither an immunologist nor a pediatrician, like his main opponents in the public controversy10. However, what was a weakness in the discrete arena of research transformed into a resource in public arenas: Gherardi appears to be an advocate of the common good, versus economic and capitalist interests, and against individual victims who, even though few in number, deserve individual consideration rather than statistical neutralization. Scientific and epidemiological experts, when they criticize the equal consideration given to misleading or hostile opinions toward vaccines and scientifically based conclusions, only partially address the subject of controversy. Finally, when institutional political actors refuse to debate a disputed public policy framework [FOU 17], like the Minister of Health in spring 2015, they are portrayed as dogmatic, and it weakens their legitimacy to investigate and settle the conflict. The denial, in public arenas, of actors who are absent or not legitimate in discreet and regulated arenas, questions the principles of the public arena. In other words, once “evidencebased science” is moved into a public arena, which is non-expert and relatively less regulated than a discrete arena, it is no longer authoritative: if it does not become a subject of mediation, it becomes an object of controversy. The citizens’ consultation on immunization, organized by the Ministry of Health in 2016 and officially intended to “restore confidence in immunization,” defined it as “one of the fundamental achievements in the field of health,”11 saying it should be analyzed in terms of the controversies                                         10 For example, Brigitte Autran or Alain Fischer, both MD/PhD specialists in immunology, at the symposium organized by the Institut des sciences de la communication and the Association des journalistes scientifiques de la presse d’information at the Senate on October 25, 2015. 11 Mission letter from the Minister of Health to the Chairman of the Steering Committee of the consultation, a doctor-researcher presenting all the attributes of scientific recognition and authority in the field of vaccination: specialist in pediatric immunology, holder of a chair at

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scattering, with a consideration for the institutionalized arenas constituting the consultation and for the parallel public arenas, in which controversies have developed, in particular about the ethics and independence of the actors in charge12. The second scenario discussed in this chapter concerns the scattering of controversies in many public arenas which are heterogeneous in terms of regulation [MEA 14]: it is another factor of politicization, in the sense that it contributes to the circulation of arguments developed by subordinate actors, as well as to the transformation of places of the actors involved, which is different from their statutes, and, in so doing, to the transformation of power relationships. The controversy surrounding the petition on compulsory vaccination13, initiated by H. Joyeux in May 2015, is a significant case in point. Unlike other petitions of the same kind, the success of this initiative and its visibility in very diverse arenas, including the institutional media arena, were linked to contextual factors much more than to an exceptional support of the very many pseudo-signatories. While the attention paid by professional journalists and editorial boards to this petition was certainly due to the large number of signatures (700,000 in less than a month), it also reflected the mimicry between editors. Even if journalists do not ignore the fallacy of the text itself, which was largely explained by the health media and scientific actors to whom the news media gave the floor very openly. Joyeux’s status in institutional media arenas is ambivalent: while his incompetency in immunology was recalled and denounced by the most legitimate scientific actors and publicized as such, he benefitted from a media capital due to his books and conferences on nutrition and well-being. Finally, the controversy over the petition ended up finding a place in the political columns of the media, when the French Minister of Health, Mr. Touraine, refused to comment on the apparent success of the petition, with a statement that became a “small sentence” [KRI 11]: “Vaccination is not an issue to be discussed.” These unprepared quotes, made by an unpopular minister of a government in difficulty on many other issues, while hearings were being                                         the Collège de France, founder of an internationally recognized institute on genetic diseases, recipient of several national and international awards. 12 Some of the stakeholders refused to respond to the invitation to the hearing on the grounds that some members of the jury of health professionals had conflicts of interest with pharmaceutical companies. 13 Entitled “Vaccin obligatoire: les Français piégés par la loi et les laboratoires!”

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held as part of the preparation of the Hurel parliamentary report, contributed to a controversy over the principle of the petition rather than its content. Even if the petition was mainly framed in the institutional media, its doubly controversial nature allowed it to exist in parallel in arenas, namely, the news media and the digital media. Joyeux gained recognition that reinforced his status as an informal spokesperson for the anti-vaccine cause. It can be assumed that this was the reason why its removal by the Conseil national de l’Ordre des médecins was not announced in June 2018, after having itself been the subject of controversy. 5.4. Scattering-selection of controversies in a plurality of arenas: proposal for an understanding of the politicization of controversies This chapter is more devoted to explaining and justifying the theory of the scattering-selection of vaccine controversies in heterogeneous arenas than to its empirical demonstration. In particular, digital arenas and, more importantly, the movement of controversies to and from digital arenas requires a more in-depth understanding without, however, overestimating their uniqueness. The choice of the notion of the arena, rather than that of public space – even when it is conceived in a fragmented way and recomposed under the influence of information and communication techniques [PAI 95] or placed in a plural sense [FRA 99] – is linked to the adequacy of its epistemological definition with the analyzed phenomenon: this notion gives a full account of the inequalities in access of individuals and groups to the various places of discussion, whether physical or immaterial, and of the power relationships that follow. This proposal has the potential to think in a continuum, many different places of debate that disciplinary boundaries within the social sciences, particularly between information and communication sciences and sociology, often contribute to separating, for example, around the dispute over the media coverage of public problems [GIL 12] and controversies [BAB 15]. This continuum represents a new territory of health politicization. However, in the field of vaccines and vaccination, subjects that operate in a controversial regime, our observation of the logic and discourses of actors over time reveals two salient features. The first is their recurrent nature,

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which is different from their durability. This means that the actors, places, or visibility of controversies are changing, even if the arguments are sustainable. This is the case, for example, in the controversy over vaccination obligations. Another salient feature is the difficulty faced by institutional and scientific actors in acknowledging the fact that scientific and epidemiological rationality, which confers positions of authority, does not prevail in all arenas of debate – quite the contrary. There is a great risk that they limit themselves to blaming populations, journalists, and lay people for their irrationality: it is contradictory with the development of consultation and mediation, and, on the contrary, it emphasizes polarization and politicization. Such an approach in terms of the scattering-selection of controversies seems to us to shed light on these phenomena, especially with a programmatic perspective. 5.5. References [BAB 15] BABOU I., LE MAREC J., “La dimension communicationnelle des controverses”, Controverses et communication, Hermès, no. 73, pp. 113–121, 2015. [BER 04] BERTRAND A., TORNY D., Libertés individuelles et santé collective. Une étude socio-historique de l’obligation vaccinale. Rapport final, Centre de recherche médecine, sciences, santé et société (CERMES), Paris, 2004. [BOU 18] BOUCHARD J., “Présentation du dossier”, Le patient en observation, Politique de communication, no. 9, pp. 5–15, 2018. [CEF 09] CEFAÏ D., “La fabrique des problèmes publics. Boire ou conduire il faut choisir !”, in GUSFIELD J. (ed.), La culture des problèmes publics, Economica, Paris, pp. 219–318, 2009. [CEF 16] CEFAÏ D., “Publics, problèmes publics, arènes publiques… Que nous apprend le pragmatisme?”, Questions de communication, dossier “Arènes du débat Public”, no. 30, pp. 25–64, 2016. [DAL 16] DALIBERT M., LAMY A., QUEMENER N., “Introduction”, Études de communication, no. 47, 2016. [DOD 99] DODIER N., “L’espace public de la recherche médicale. Autour de l’affaire de la ciclosporine”, Réseaux, no. 95, pp. 107–154, 1999. [FER 16] FERRON B., “Professionnaliser les ‘médias alternatifs’? Enjeux sociaux et politiques d’une mobilisation (1999–2016)”, Savoir/Agir, no. 38, pp. 21–28, 2016. [FOU 04] FOUCAULT M., Naissance de la biopolitique. Cours au Collège de France. 1978–1979, Gallimard – Le Seuil, Paris, 2004. [FOU 17] FOUILLEUX E., JOBERT B., “Le cheminement des controverses dans la globalisation néo-libérale. Pour une approche agonistique des politiques publiques”, Gouvernement et action publique, no. 3, pp. 9–36, 2017.

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[FRA 99] FRANÇOIS B., NEVEU E. (eds), Espaces publics mosaïques, Presses Universitaires de Rennes, Rennes, 1999. [FRE 12] FRESSOZ J.-B., L’apocalypse joyeuse, Le Seuil, Paris, 2012. [GIL 12] GILBERT C., HENRY E., “La définition des problèmes publics: entre publicité et discrétion”, Revue française de sociologie, vol. 53, pp. 35–59, 2012. [GUS 09] GUSFIELD J., La culture des problèmes publics, Economica, Paris, 2009 [1981]. [GUS 12] GUSFIELD J., “Significations disputées. Contester la propriété et l’autorité des problèmes sociaux”, in CEFAÏ D., TERZI C. (eds), L’expérience des problèmes publics, Éditions de l’EHESS, Paris, pp. 113–132, 2012 [1989]. [HIL 88] HILGARTNER S., BOSK C. L., “The rise and fall of social problems: a public arenas model”, American Journal of Sociology, vol. 84, pp. 53–78, 1988. [JEA 98] JEANNERET Y., “L’affaire Sokal : comprendre Communication et langages, no. 118, pp. 105–114, 1998.

la

trivialité”,

[JUL 15] JULLIARD V., “Les apports de la techno-sémiotique à l’analyse des controverses sur Twitter”, Réseaux, no. 73, pp. 191–200, 2015. [KRI 11] KRIEG-PLANQUE A., OLLIVIER-YANIV C., “Les ‘petites phrases’ en politique”, Communication & Langages, no. 169, pp. 12–21, 2011. [LEM 07] LEMIEUX C., “A quoi sert l’analyse des controverses?”, Mil Neuf Cent – Revue d’histoire intellectuelle, no. 25, pp. 191–212, 2007. [MEA 14] MÉADEL C., “‘Partager ma propre opinion’. La grippe H1N1 : connaissances et échanges électroniques”, Le Temps des médias, no. 23, pp. 128–140, 2014. [MOU 96] MOULIN A.-M., L’aventure de la vaccination, Fayard, Paris, 1996. [OLL 15] OLLIVIER-YANIV C., “La communication publique sanitaire à l’épreuve des controverses”, Hermès La Revue, no. 73, pp. 71–80, 2015. [OLL 17a] OLLIVIER-YANIV C., “La vaccination, ça se discute? Le rapport sur la politique vaccinale, espace polyphonique inédit”, Mots. Les langages du politique, dossier “Le rapport entre description et recommandation”, no. 114, pp. 117–133, 2017. [OLL 17b] OLLIVIER-YANIV C., “Jouer dans la cours des grands? Intervenir et agir sur la santé publique par une controverse vaccinale”, Speech at the Congrès de l’Association Française de Science Politique, thematics section “Controverses et jeu politique”, Montpellier, July 10–12, 2017. [PAI 95] PAILLIART I. (ed.), L’espace public et l’emprise de la communication, Ellug, Grenoble, 1995. [REN 99] RENNEVILLE M., “Le propre de l’ordre. Hygiène et biopolitique en République”, Revue de Synthèse, vol. 120, no. 4, pp. 621–635, 1999.

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[REN 16] RENNES J., “Les controverses politiques et leurs frontières”, Etudes de communication, no. 47, pp. 21–46, 2016. [ROU 19] ROUBAN L., TOURNAY V., “Le populisme contre la science”, Baromètre de la confiance politique. La note, CEVIPOF-Science Po, January 2019. [SET 14] SETBON M., “Controverses scientifiques et perception du risque”, Sciences et Pseudo-Sciences, no. 310, pp. 58–67, 2014. [WAR 15a] WARD J., Les vaccins, les médias et la population: une sociologie de la communication et de la représentation des risques, PhD thesis, Université ParisDiderot, Paris, 2015. [WAR 15b] WARD J., PERETTI-WATER P., LARSON H. et al., “Vaccine-criticism on the Internet: new insights based on French-speaking websites”, Vaccine, vol. 33, no. 8, pp. 1063–1070, 2015.

 

6 Internet User-Patient(s), a Collective Adventure

6.1. Introduction A new actor has emerged in the unique discussion between the patient and their doctor, and this actor is of course the Internet. But the Internet is not an actor: it is at the same time a device, a set of applications, ways of acting and interacting; it is multiple things and the singular does not suit it as it is so diverse in terms of its models and uses; in short, it is rather multiple territories with their inhabitants, their tools, their practices, and their controversies. The importance of the Internet can be seen first and foremost in terms of information. For nearly 30 years, the web has revolutionized traditional ways of disseminating medical information, not only for professionals but also for anyone interested in health-related issues. In all countries where the Internet is present, the same observation applies: the web plays a major role in this area [ROM 12]. In France, according to a 2013 TNS survey1, 57% of Internet users consulted the web for health reasons, almost as often for people they knew as for themselves. Other measures show even more sustained consultation: according to the latest INPES health barometer published [RIC 15], 69% of the population consults the Internet for health                                         Chapter written by Cécile MÉADEL. 1 Les Français et l’internet santé. Maladie chronique et numérique attitude, Patients & Web and Lauma Communication, available at: http://www.patientsandweb.com/wp-content/ uploads/2013/04/A-la-recherche-du-ePatient-externe.pdf [accessed May 15, 2019], April 2013.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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information (87% of Internet users according to the same source). If we look at the audience: the most visited press site in terms of health is ranked eleventh: Doctissimo received nearly 43 million unique visitors in January 20192. 6.2. From rarity to effervescence The change is all the more significant because, in terms of health, information for the general public has traditionally been mainly in the hands of professionals [AKR 10]. Previously countless publications and various texts from research centers, clinical units, industrialists and health authorities were difficult to access and the public had access to only a small portion of these texts. Admittedly, there was a wide range of information available to the lay public, through the generalist or specialized media, through general public books and by health authorities; but it was very largely placed under the direct or indirect authority of health professionals. This source of information remains significant. Thus, television remains, particularly in popular circles, the main provider of health information [SEU 18]. The Internet has in fact played a central role in opening up health information to everyone; this mainly ranges from an unsurpassable source to formal knowledge, to everything related to understanding pathology, treatment and care, screening, diagnosis, etc. Due to the increased popularity of the web, medical and scientific institutions have lost their generalized control over the provision of this information. They are no longer in a position to filter and check information quality, nor to control their popularized forms; in the same way, traditional representatives, such as the press intended for professionals, or that which is aimed at the general public, which are not very open to debates and discussions with non-professional actors, are competing with new information producers. Indeed, with the advent of the web and the multiplication of sites or various applications, health information has become overabundant with an immeasurable number of spaces talking about health. Its availability is wide, even if the barriers to entry are far from negligible. Its heterogeneity is even more innovative as both the type of information available and its producers have diversified: beyond health professionals, researchers, and specialized                                         2 Source: ACPM.

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journalists, the web now gives access to industry publications, patient stories, interventions by associations, etc. Two strong characteristics of this health information can be noted: 1) new formats put the patient at the center of their devices and 2) exchanges between patients constitute a central resource. 6.3. Polyphonic formats In recent years, Internet health has no longer been limited to the provision of information: online health services, which were underdeveloped until the early 2010s [ROM 12], are multiplying and are helping to reconfigure the relationship between patients and professionals. Applications, long limited in particular by regulatory constraints, are beginning to spread, and corroborating studies that show the great confidence that the French population has in digital technology: 81% believe that the development of digital tools in the health sector could make it possible to improve the quality of care3. Thus, the various stages of the patients’ journey are increasingly passing through the Internet: appointment booking providers have found their market (allodocteur, doctolib, rdvmedicaux, etc.). Furthermore, online medical advice is developing; since September 2018, teleconsultation can be reimbursed by health insurance providers from the moment the practitioner has prior knowledge of the patient. In short, the Internet is becoming an increasingly important gateway to the health experience. Some services go even further, offering patients the opportunity to participate in their own medical follow-up. For example, the Aviitam platform, launched in 2014, aims to develop and improve patients’ own care in order to influence their lifestyles and limit drugs, particularly for obesity problems. The patient enters their data into the database and shares them with the health professional of their choice in a notebook. According to [CAS 17], it “is perceived by the interviewees as a space of freedom, of trust, taking into account the person’s feelings and experiences. The informed/educated patient becomes an engaged patient and the tool serves as a mirror, a coach and can thus help him to change his habits and behaviors.” These applications are therefore supposed to give Internet users the ability to act by providing them not only with a communication tool but also a selflearning tool.                                         3 Sondage ODEXA: Baromètre Santé 360, available at: http://www.odoxa.fr/sondages/ barometre-sante-360-odoxa-mnh-orange-healthcare/ [accessed May 15, 2019], March 2018.

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Many services such as Patientslikeme or Carenity also aim to collect patient data [RAV 17] by grouping them by pathology, which enables information to be collated on symptoms, treatments, developments, patient feelings and to organize patient networks for support and exchanges. If, as the Patientslikeme website announces, “it is a question of sharing one’s experience, meeting patients like oneself, and learning from others,” the objective is also to be able to translate individual experiences into knowledge that can be mobilized by researchers and industrialists: the company sells, with the agreement of its participants, the data collected to the pharmaceutical industry in particular [AKR 09a]. These platforms aim to reconcile two usually contradictory objectives [BUR 14]: to obtain patient data that can be processed and to increase control of the patient’s pathology, restoring it through shared information on the ability to act. However, the information thus collected remains essentially confined: on the one hand, the formal data, resulting from the processing of large feedback, articulated with clinical or research questions, and on the other hand the expressions of patients considered as raw material that has no meaning other than collated and disindividualized. An example of maintaining this sharing is a research project called Domino4, which analyzes discussion forums to find information on drug misuse: automated message processing helps define whether the terms used by forum members are consistent with the “medical” standard, with proper compliance. To do this, messages must be extracted from their context and considered as independent units. Such processing denies a central component of this form of information: the fact that it is the result of an exchange and that it is part of the continuity of numerous and various types of information. We are therefore left in a situation where patient discourse is enclosed, limited to their area of (in)competence [BUR 14]. 6.4. The bubbling of exchanges The increased availability of health information does not only affect individuals. It must be understood through the Internet’s own exchange mechanisms, which are proliferating and omnipresent. Everywhere, as we know, Internet users are “at work”; they contribute, give their opinions,                                         4 Available at: https://drugssafe.fr/2018/04/25/domino/ [accessed May 15, 2019]. As part of the Drugs-Safe platform funded by a Public Agency, l’Agence Nationale de Sécurité du Médicament et des Produits de Santé.

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discuss, evaluate, and so on. Their commitment levels vary greatly, from an activity so low that the Internet user hardly notices that he is contributing to a collective work to a massive, continuous and permanent investment, as we have seen in collectives around Parkinson’s disease or cancer, vascular diseases, people with autism, etc. In terms of health, these exchanges are everywhere, on social networks, on general public sites, in specialized spaces5, or in discussion lists [MEA 13]. Doctissimo, the most visited health site, illustrates the importance of these exchanges [KIV 14] with its hundred or so forums6. It is of course in the platform’s interest to encourage exchanges between patients that strengthen the loyalty of Internet users and provide content; thus, it highlights in its forums not the densest messages or answers to recurring questions, but the most followed and most debated discussions [ROM 12]. We can then see that patients are no longer just recipients of health information; they become, at the same time as a target, sources of information. It is a question of being invited to the table of medical information on websites, blogs, discussion lists, newsgroups, etc. not only, as we will see, to find support during a disease ordeal, but also to follow scientific news, for them to offer their analysis of the disease, assess treatments and management, and so on. As a result, a less exclusive definition of health is exported, much less “pure” than in the biomedical field and closely linked to the concerns of daily life [KIV 14]. Drawing on both the work done over the past 20 years on e-health in collaboration with Madeleine Akrich and the literature on these issues, this chapter aims to explore the collective dimension of these new territories and how they affect both the relationship with professionals and the modalities of information and knowledge of disease. We will first see what patients do with health information on the Internet and how their activities interfere with professionals. Then we will examine the collective nature of patient action on the Internet. Finally, we will look at the secular and collective productions of these patients.

                                        5 Examples include lesimpatientes, rareconnect, vivresanstyroïde rareconnect, vivresanstyroïde, etc. 6 In February 2019, Doctissimo indicated that its forums have provided 315 million messages since 2000.

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6.5. The quest for information The request for information appears to be an essential reason for consultation in all surveys: The main use is to seek information to obtain information about a disease or the symptoms of a disease (59%), then about drugs (38%). (...) As regards the reasons for seeking health information, for 47% of Internet users, it is a question of better understanding the information given by their doctors and for 46%, of finding additional information. 22% want to confirm the information provided by doctors and 14% want a second medical opinion. Finally, 34% are looking for information for their loved ones. [FAR 15] We can already see how diverse the objectives are in this quest for knowledge, in which the aim is to understand, supplement, verify and learn. We also know how understanding (or misunderstanding) is a crucial issue during medical consultations. Not only when there is a diagnosis that the patient cannot hear or only partially hears because he is so upset, but also more generally in too quick a consultation; Isabelle Baszanger [BAS 10] has clearly shown the asymmetry of exchanges, the questions being primarily asked by the doctor and not by the patient. Thus, for many of the respondents, the web provides access to a better understanding of their health problems and medical presentations. The place for information retrieval on the Internet depends on several variables. These are first of all sociocultural in nature [REN 08]. All studies find that there are differences in Internet use patterns according to education level, home location, family configuration, age, etc. [REN 09]. Workingclass households do not have the same use of the web [PAS 18] since the family plays a more important role with collectively shared visions of health issues [SEU 18]. Gender is also involved because women have a particular role in addressing these issues and are much more active in seeking health information [RIC 15]. Digital literacy skills are also important in that they provide answers that are considered more satisfactory [AMS 15]. The search for health information on the web also varies according to the question asked: some themes require discretion and privacy, some respond to concerns that may be considered sensitive by the person or to concerns that are not acknowledged. Research is, therefore, unevenly distributed according to individual profiles [FAR 15], [BAT 16], [WIL 13], for example, who may

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be more or less inclined to seek information: the elderly more than the young, the sick more than the healthy, women more than men, the more educated more than the less educated, the heavy users of the Internet more than the small, etc. Also, information “will only contribute to the appropriation of new health standards to the extent that it is integrated into the individual’s social environment, that is, in his relationship to his group(s) of belonging and what they convey: representations, relationship with the body, socially distributed knowledge” [KIV 14]. The importance and seriousness of the health problem also play a role. According to the authors, the Internet is mobilized for minor health problems [SEU 18], especially when there is a fear of disturbing the doctor “for nothing” [AMS 15]. However, these web consultations are undoubtedly quite different when it comes to serious pathologies. According to a survey [COL 13], serious illnesses and serious health problems, chronic diseases lead to more visits to the Internet than questions of well-being or minor pathologies. The contradiction between these two results is probably only apparent: it can be assumed that the engagement is not the same: from the superficial interrogation of a search engine for a stye to in-depth research about a grandfather’s cancer diagnosis. 6.6. Medical anxieties As such more informed patients have aroused great mistrust among the medical profession and health professionals have been very concerned about them [AKR 09b], as shown by the white paper published by the Conseil national de l’ordre des médecins7 in 2015: it still regrets the Internet is often considered as “a disruptor of the relationship, almost a challenge to their skills.” In addition to the fear of mistrust between doctors and patients, there are many criticisms [GAG 10]: the Internet, a factor of patient disorder, the Internet guilty of feeding or even provoking hypochondriac behavior8, the Internet, a factor of dehumanization of the relationship between patient and doctor9 [DED 11], the Internet, a source of erroneous information [MEA 14], commercial and dishonest [WEB 12], and so on. A doctor summarizes in a                                         7 The French main professional, administrative and jurisdictional body for the defense and regulation of the medical professionals. 8 Daily Telegraph, December 9, 2002. 9 For 71% of physicians according to an Ipsos survey, Les médecins à l’heure du numérique, January 31, 2017.

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shock formula his reasons for recrimination: “The Internet is to medicine what pornography is to eroticism. It has the crudeness, the brutality, the shadiness, the violence”10. However, research has shown how much these fears were exaggerated, even erroneous11. The question of how patients mobilize this information during consultation is a little less well documented [THO 13]. The study of the Order of Physicians nevertheless states that the search for medical information has no connection with a medical consultation for 70% of Internet patients, that only 10% browse the Internet before a consultation and 18% after. G. Eysenbach [EYS 08] coined the neologism of “apomediation” to describe this phenomenon of network collaboration, stressing that professional intermediaries and, in the first place, physicians do not lose any of their credibility; it is simply resituated according to patients’ concerns. Patients are very concerned about respecting the prerogatives of health professionals and do not want to give them the impression that they would be confronted with two sources of authority12. Field surveys, such as those in newspapers13, report a common attitude of patients who mask knowledge collected on the Internet in front of their practitioners, attributing it to relatives or even masking it more or less skillfully, in what we have called reverse paternalism [MEA 10]. Reticent or not, probably rarer nowadays, for professionals, the fact remains that information is massively and very generally sought on the web. According to [FAR 15], this could lead to a redefinition of patient-physician relationships with the objective of either understanding the diagnosis or challenging it. This binary position (confirming or contesting) legitimate in                                         10 Richard Torrielli (former doctor at the University Hospital of Bordeaux), “Internet est à la médecine ce que la pornographie est à l’érotisme,” Le Monde, May 9, 2013. He wrote: “The Internet ‘shows a trivial, simplistic, reductive representation of the human being and his destiny in the face of health dangers. In a picture without nuance delivered all to fright at home, how to discern each case within what is – at best – an unrewarding question of examination? Not to mention the ‘forums’ where resentments and failures felt – more or less rightly – of questionable or hasty treatment flows. Forums where diagnostic errors, complications of diseases, deleterious effects of treatments are vehemently described. Faced with such a dubious representation of human disorders as sex through X-rated films, how could each of us (and not just a patient) not see our anxiety increased?’”. 11 Let us quote [AKR 09b], [CAS 16], [GAG 10], [LEM 08], and [ROM 10]. 12 See literature review in [THO 13]. 13 P. Kremer, “Le docteur, internet et moi,” Le Monde, January 6, 2017.

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their econometric approach which aims to measure the “additional utility” derived from the use of the Internet, drastically reduces, in our opinion, the role of the Internet in information retrieval. 6.7. From information to empowerment For many authors14, this interest in health information in a context of increased accessibility makes it possible to empower patients and contribute, in other words, to their empowerment. This approach is not specific, far from it, to health, but it is particularly relevant in this field in a context where, at least since Eliot Friedson’s work in the 1960s and 1970s, questions have been raised about the impact on the health of the asymmetric position between patient and doctor. The development of online information would, therefore, mean, for example, for cardiologist Eric Topol [TOP 15], the undermining of medical paternalism and the emergence of an autonomous or even emancipated patient. The wide dissemination of health information is presented as contributing to “health democracy,” i.e., a reduction of these famous information asymmetries between the patient and health professionals and patient empowerment [DUM 17]. This transformation of the patient does not stop at the Internet but is part of a broader evolution of the patient’s position toward professionals and institutions, which began before the Second World War with the alcoholics anonymous movement and the development of self-help in the United States, which arrived later in France. The first General Estates of cancer patients, the transformation of patient associations less oriented toward charity support or the exclusive financing of research, and their evolution in particular around the fight against HIV inspired by civil rights movements [BAR 02], the avenues to research for patient groups such as the AFM [RAB 00], the development of participation mechanisms [COM 14] or the recognition of the patient’s expertise by the Health Act of January 2016 contribute to modifying the role of patients to make them recognize the importance of their experience in the management and understanding of their condition, and lead to them being considered as partners and not simply as objects of care. Admittedly, this empowerment is the subject of controversy [DUM 17] and the recognition of the value of the patient’s specific experience is                                         14 Let us quote [AMS 15], [CAS 17], [TOP 15], and [COM 14].

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disputed [BUR 14], but this change is in fact, as shown by [GEL 16], part of the long mobilization of lay people around health, which has seen a notable and rarely highlighted occasion with the struggle for the right to abortion. It is not simply a question of obtaining a right through medical practices, but of reappropriating women’s bodies by themselves, or even, with the Karman method, of demedicalizing abortion, since this is seen as a viable technique by laypeople. This places the history of this method (as well as that of AIDS screening) as activism that aims to be “critical of the boundaries established between doctor and patient” [GEL 16]. This leads the authors to note differences not only between patients and professionals but also between activists and those concerned with a strong desire to intervene in therapeutic choices, to be taken into consideration, to place themselves in a position of responsibility for their own health. On the Internet, this distinction between those concerned and activists is achieved in the form of an opposition between those who read and those who participate, between the lurkers [PRE 04] and the active. The ability of the Internet to act varies according to the intensity of participation [AKR 09a], [AKR 18]. 6.8. The patient facing the flow: A collective The work on this long struggle for health democracy focuses on the social movements that have supported it, on the forms of participation in the institutions that have been set up, and on the transformation of the informed patient and their exchanges with the medical profession. Fewer studies have analyzed the role of the Internet, which, as we hypothesize, contributes significantly to redefining the opposition between the individual patient and the collective patient by making the collective experience or individual’s discourse and the information collectively composed. We, therefore, propose to move away from an individualistic conception of patient, seen as isolated in the face of the exuberant flow of health information. The individual’s own characteristics play a role, as we have seen, in their consultation on the web. However, the individual is endowed with network resources, of strong and weak ties. Like all information, that which the patient collects on the Internet is subject not only to being shared with relatives but also with opinion leaders, authorities, “moral entrepreneurs,” online and offline. The study of [REN 09] thus highlights the role of the neighborhood when it reflects the importance of residence in health consultation; probably less expected, it finds that the probability of using the

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Internet for health purposes is higher in neighborhoods with a higher proportion of undergraduates and, less significantly, in the most disadvantaged areas. This result can be explained, according to the authors, by the fact that these disadvantaged populations would be further from care and more likely to research reported health issues (while privileged populations would be more likely to focus on prevention). However, the survey came at a time (2005) when not all households were equipped and even less so with internet access. It can also be assumed, supported by the work of Dominique Pasquier [PAS 18], that Internet research is carried out in a much more collective context in low-income families, for whom the computer is shared and strictly individual consultation is rare or difficult. Online consultation is actually a collective matter. The notion of empowerment insists on the capacities to acting that the device, here the web, gives to the individual. But it should be added that these capacities are strongly linked to the networks in which it is inserted. Let us take the three logics of empowerment that are at work, according to the literature, in the Internet-user patient [LEM 08]: the logic of care provision (the patient does what the doctor has prescribed), the logic of care consumption (the patient makes choices according to his own judgments), the community logic (the patient participates in networks). In fact, these three logics are inextricably articulated both in the practices of Internet users and in the design of platforms. However, analyses tend to separate them: for example, studies on Doctissimo forums on a health issue focus only on the content of the exchanges, without comparing them with medical or media information also available on the same site15. While the patient who researches, for example, about a stiff hip is offered medical articles on the definition of hip luxation, bone tumors, etc., or, on a more media level, a survey on non-compliant prostheses, videos for buttock exercises, articles on swimwear, a quiz to measure the intensity of arthrosis, and several dozen discussion threads with testimonies, questions, and “regular” or professional interventions. And no doubt the user also visits several sites and forums that his search engine has offered. These different forms of content are not disjointed and feed each other. There is, therefore, a strong articulation between individual research, collective analysis, interpersonal exchange, and all kinds of information. But this articulation occurs on the patient side. It does not occur in the devices themselves (just as it is rarely found in research works). This                                         15 Examples: [GAU 12], [GRA 13], and [PIE 10].

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multiplication of media is in fact ordered around a clear-cut perspective: on the one hand, the comments of professionals who give all kinds of information about the disease, and on the other hand, anonymous people who have only a pseudonym and no authority. There is no real value in these lay patients’ words: the forums of major platforms such as Doctissimo are above all conceived as places of communication and exchange, based on a mutual aid model and not claims or knowledge. However, the Internet user is not alone in dealing with her health issues; this leads to questioning the individualizing representation that sees her as helpless in the face of an ocean of information that would assail her. Indeed, information retrieval is only one of the Internet users’ actions; the search for peers or people who share the same condition and anxieties [FAR 15] appears as a strong and recurring motivation for online activities around health. Of course, participation is not a generalized attitude and these exchanges obey the law of power. According to the TNS survey, only one-third of those who use the Internet for health reasons discuss these topics (mainly with other patients), and the share was lower in our research [MEA 13]. The work on discussion lists [AKR 09a], [CAS 16], [LOR 03], [MEA 13] has highlighted the importance for participating patients in being able to discuss with people who have the same questions and face the same uncertainties. The collective of discussing patients is not necessarily limited to only those directly or indirectly concerned. Collective support activity is expressed in particular through what Yaëlle Amsellem-Maingui [AMS 15] calls “a feeling of empathy by proxy”: “First because a person has an identical (or almost identical) question to the one we would like to ask, then because others support that person publicly. The links that are created, however virtual they may be, quickly become intense.” Like [ADL 13], our work on cancer, Parkinson’s disease [AKR 09a], and autism [MEA 06] shows the benefits of a gathering of peers, available and willing Internet users. Four types of support can be distinguished, using the typology of [CAS 16]: 1) social integration support, support provided by seeing that you are part of a group and that you are not alone, 2) informational support that provides information, advice and guidance, 3) emotional support based on the trust that can be obtained from those who understand the condition and its problems, and 4) instrumental support, with practical and material support.

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A survey of people with anorexia [CAS 16] and a survey on self-harm [ADL 13] show that these four types of support are closely combined: patients in both cases express a desire to escape both condemnations and perverse encouragement or unhealthy questions caused by their condition: “the unwavering support and acceptance they find in cyberspace can free individuals from misconceptions of themselves, dispel the absurd myths and beliefs they encounter in the real world, and help them redefine their deviance from new perspectives” [ADL 13]. The exchanges of these groups with people who share their condition show in both cases the same willingness to escape a painful condition without judgment and without complacency either. Thus, people who self-harmed refused to elaborate on their actions, to show or detail their injuries [ADL 13]. For less dramatic or acute problems, the contribution of peers can remain decisive. Thus, a survey of people who used self-measuring devices highlights the importance of interactions between users: “The comparison also aims to validate ideas, and to estimate in the exchanges the coherence of one’s own thinking. (...) Through comparison, measures introduce new rules because they are socially shared. In these sharing rituals, users co-construct their own social representations” [ARR 13]. Thus, the patient-internet user’s understanding is not individual but results from his interactions with other actors, opinion leaders, family, colleagues, but also professionals, practitioners, etc. Admittedly, this process does not necessarily, or only, lead to separating the good grain of validated knowledge from the chaff of uncertain content, the charlatan’s page from that of the responsible Internet user, but it provides users with a certain number of benchmarks that allow them to locate the proposals, to evaluate the relevance of the information found and its adequacy with the specific problem they are facing, which is not necessarily expressible in medical terms stricto sensu, and sometimes, as we will see, to contribute to knowledge about their problem. 6.9. Layperson production The collective nature of the work carried out over the Internet does not only lead to the translation and dissemination of information, or to support; it also leads to the production of layperson knowledge about the disease, i.e., knowledge that can be transmitted, summed up and detached from individual experience alone [AKR 09a], [AKR 18], [MEA 06], [MEA 16]. This knowledge has the capacity to become autonomous and to acquire its own

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formats and rhetoric, in a particular regime of openness and circulation of content. Research on health tends to ignore patients’ contributions, including when addressing the issue of their empowerment; contributions that are nevertheless widely highlighted in the literature on participation: “Many online collectives have an ‘epistemic’ purpose, producing knowledge, practices, or tools for subsequent epistemic activity, going hand in hand with the production of the collective, the social bond, the feeling of belonging to a ‘community’. Collectives produce by performing” [LAU 18]. This production leads to what can be called layperson knowledge: it does not come from recognized authorities and does not, or rarely, come under canonical modes of production and dissemination; this knowledge derives its value not only from ordinary modes of verification of knowledge but also and mainly from its ability to answer the questions raised by the persons involved [MEA 13]; however, their context is particular since the questions they answer are themselves a result of work, which is not previously defined, that they mobilize heterogeneous and heterodox resources (in relation to scientific models and specifically here to evidencebased medicine). From our work, we can distinguish four “ideal-types” of these layperson production formats. The first is the reasoned collection of information. Patient activity can lead to the creation of a body of documents that will serve to increase individual knowledge and provide a common knowledge base for those who participate in or follow the collective. It is not just about collecting and making available existing information. In discussion lists, forums and patient sites, we observe that real multidimensional translation work is being done. First in the first sense of the term, then in the sense of popularization (those who know the vocabulary make it understandable to others) and finally as an adaptation of the scientist to the layperson: these active patients put medical or scientific knowledge in harmony with the specific questions raised by the collective in which they publish. This work, therefore, leads to a real endogenous production that cannot be reduced to popularized knowledge. The second ideal-type is the result of the general increase in individual testimony, based on personalized accounts of patients’ physical conditions, treatments, experiences, explanations in the vernacular language, etc. Most of these interventions remain local, punctual, ephemeral, for the duration of

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a post, an email or a discussion thread. However, under a number of conditions, these collectives succeed in transforming this content to give it a more sustainable and shared validity. We have studied [MEA 13] the example of the initiatory account of the founder of a list around Parkinson’s disease whose history of the disease serves as a model of self-assertion for patients who have difficulty in understanding the manifestations of the disease, often inconsistent and incomprehensible. Yet, on the same disease, the work of collecting individual experiences to have a drug-related addiction problem recognized by the medical profession, social institutions, and the courts. The confrontation of individuals’ experiences and the approximation with medical and scientific knowledge lead to the creation of experiential knowledge useful to the collective and to the construction of collective expertise. The third one takes a step forward in the confrontation with medical knowledge by arriving at its own explanations. This is particularly true of the collectively established diagnosis. We have seen cases where discussion brings out the diagnosis by moving from the description of observations to a term that reflects the state; it thus allows the collectively identified person to feel part of a community, but also to adhere to this diagnosis that otherwise could be rejected. This is the case, for example, of a woman interviewed by P. Adler [ADL 13] who explained that she did not feel concerned about the issue of self-harm, considering that the injuries she acquired were only a game over which she had control. Thus, she explained to him: “In fact, I am part of this collective [of self-harmers]. [The Internet] helped me to recognize this identity. Whereas before, (...) it was not an identity, it was rather a habit” [ADL 13]. We have encountered the same collective phenomenon of self-recognition on the mailing lists around autism, and more particularly Asperger’s. The fourth ideal type is still close to orthodox knowledge by mimicking, in its own way, scientific production. Some groups set up real epidemiological databases, others build computerized medication tools; many produce well-argued bibliographic databases. Like any research, this knowledge proceeds from the establishment of a grid of questions, the instrumented collection of information, the observation and processing of the data collected, but from a complex material because it is difficult to standardize and with “interviewers” who are also difficult to frame, and finally from the various distribution, yet with that are most often not conventional.

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It remains to be seen how this layperson knowledge can feed scientific research and clinical approaches. The work on epistemic communities carried out by Madeleine Akrich [AKR 18] has analyzed how, by placing the acquisition of knowledge at the center of their concerns, they succeed in a number of cases in articulating layperson and learned knowledge in a process that she has called evidence-based activism. 6.10. Conclusion These new practices, which involve the participation of laypeople, a collaborative work, a redefinition of the social networks of health professionals or patients, the creation of knowledge bases, and the collection of layperson knowledge, represent a major change in the experience of disease through the collective dimension of the health approach that they reinforce and even multiply. Doctors are not mistaken who visit patients’ sites, or even create and run platforms (such as Atoute by Dr. Dupagne) or sites (such as Didier Mennecier on Hepatoweb). These collective modes of expression have had the effect of influencing and echoing patients’ voices and, in a number of cases, of bringing their condition into existence. Internet interventions by parents of children with autism [MEA 06], individuals who self-harm [ADL 13] or patients with chronic fatigue syndrome [LOR 03] have contributed to the recognition of their problem and to the questioning, in all three cases, of psychoanalytical approaches to better legitimize other forms of care, or even to destigmatize these issues, both publicly, politically and also through the media. Under a number of conditions, it can therefore be concluded that this layperson knowledge can make an original and useful contribution to both public debate and knowledge. In short, this layperson production contributes to fueling the public debate on health and to increasing knowledge, if only in terms of patients’ perceptions and reactions. 6.11. References [ADL 13] ADLER P.A., ADLER P., “Self-injury and the Internet”, RESET, no. 2, available at: http://journals.openedition.org/reset/310 [accessed May 15, 2019], 2013. [AKR 09a] AKRICH M., MÉADEL C., “Les échanges entre patients sur internet”, La Presse médicale, Masson et Cie, Paris, pp. 1484–1493, 2009.

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[AKR 09b] AKRICH M., MÉADEL C., “Internet: intrus ou médiateur dans la relation patient/médecin?”, Santé, Société et Solidarité, no. 2, pp. 87–92, 2009. [AKR 10] AKRICH M., MÉADEL C., RABEHARISOA V., Se mobiliser pour la santé. Les associations témoignent, Presses des Mines, Paris, 2010. [AKR 18] AKRICH M., “De la participation à l’engagement: communautés en ligne et activisme dans le domaine de la santé”, in LAURENT B., BAKER M., BEAUDOUIN V. et al. (eds), Innovation et Participation. Approches critiques, Presses des Mines, Paris, pp. 19–40, 2018. [AMS 15] AMSELLEM-MAINGUY Y., ‘A la fin, tu penses que tu vas mourir, mais tu y retournes’. Jeunes, santé et internet, Rapport de l’INJEP, Paris, 2015. [ARR 13] ARRUABARRENA B., QUETTIER P., “Des rituels de l’automesure numérique à la fabrique autopoïétique de soi”, Les Cahiers du numérique, vol. 9, no. 3, pp. 41–62, 2013. [BAR 02] BARBOT J., Les Malades en mouvement. La médecine et la science à l’épreuve du Sida, Balland, Paris, 2002. [BAS 10] BASZANGER I., “Une autonomie incertaine: les malades et le système de soins”, in HIRSCH E. (ed.), Traité de bioéthique, ERES, Paris, pp. 189–198, 2010. [BAT 16] BATTAÏA C., “Information médicale et émotion dans les forums de santé”, Les Cahiers du numérique, vol. 12, no. 1, pp. 51–72, 2016. [CAS 16] CASILLI A., TUBARO P., Le phénomène “pro ana”. Troubles alimentaires et réseaux sociaux, Presses des Mines, Paris, 2016. [CAS 17] CASES A., “L’e-santé: l’empowerment du patient connecté”, Journal de gestion et d’économie médicales, vol. 35, no. 4, pp. 137–158, 2017. [COM 14] COMPAGNON C., GHADI V., Pour l’an II de la démocratie sanitaire, rapport pour le ministère des affaires sociales et de la santé, Rapport à la Ministre des affaires sociales, available at: https://www.ladocumentationfrancaise.fr/ var/storage/rapports-publics/144000107.pdf [accessed May 15, 2019], 2014. [DED 11] DEDDING C., DOORN R., WINKLER L. et al., “How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients”, Social Science and Medicine, vol. 72, no. 1, pp. 49–53, 2011. [DUM 17] DUMEZ H., MINVIELLE É., “L’e-santé rend-elle la démocratie sanitaire pleinement performative?”, Systèmes d’information et management, vol. 22, no. 1, pp. 9–37, 2017.

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[EYS 08] EYSENBACH G., “Credibility of health information and digital media: new perspectives and implications for youth”, in METZGER M.J., FLANAGIN A.J. (eds), Digital Media, Youth, and Credibility, MIT Press, Cambridge, pp. 123–154, 2008. [FAR 15] FARAJALLAH M., LE GOFF-PRONOST M., PENARD T. et al., “Quoi de neuf docteur? Une étude économétrique sur la recherche en ligne d’informations médicales par les patients”, Journal de gestion et d’économie médicales, vols 4–5, no. 33, pp. 231–251, 2015. [GAG 10] GAGLIO G., “Consommation d’informations sur Internet et modulation de la relation aux médecins. Le cas d’aidantes de malades atteints d’une pathologie lourde”, Sociologies Pratiques, vol. 20, pp. 63–74, 2010. [GAU 12] GAUDUCHEAU N., “Demander de l’information dans un forum de discussion: L’exemple d’Ados.fr”, Les Cahiers du numérique, vol. 8, no. 1, pp. 63–96, 2012. [GEL 16] GELLY M., PAVARD B., “De la fabrique des militant-e-s à la fabrique des patient-e-s. Deux mobilisations de profanes: l’avortement (1972–1975) et le dépistage du sida (2007–2011)”, Genèses, vol. 1, no. 102, pp. 47–66, 2016. [GRA 13] GRANDJEAN N., “Allaiter sur le web: Entre biopouvoir et rituels numériques”, Les Cahiers du numérique, vol. 9, no. 3, pp. 63–81, 2013. [KIV 14] KIVITS J., HANIQUE M., JACQUES B. et al., “L’appropriation de l’information médiatique au sujet de la prévention et du dépistage des cancers”, Le Temps des médias, vol. 23, no. 2, pp. 151–163, 2014. [LAU 18] LAURENT B., BAKER M., BEAUDOUIN V. et al. (eds), Innovation et Participation. Approches critiques, Presses des Mines, Paris, pp. 19–40, 2018. [LEM 08] LEMIRE M., PARÉ G., SICOTTE C. et al., “Determinants of internet use as a preferred source of information on personal health”, International Journal of Medical Informatics, vol. 77, pp. 723–734, 2008. [LOR 03] LORIOL M., “Faire exister une maladie controversée: les associations de malade du syndrome de fatigue chronique et Internet”, Sciences sociales et Santé, vol. 21, pp. 5–40, 2003. [MEA 06] MÉADEL C., “Le spectre ‘psy’ ordonné par des parents d’enfants autistes. L’étude d’un cercle de discussion électronique”, Politix, vol. 1, no. 73, pp. 57–82, 2006. [MEA 10] MÉADEL C., AKRICH M., “Internet, tiers nébuleux de la relation patientmédecin”, Les tribunes de la santé, vol. 29, pp. 41–49, 2010.

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[MEA 13] MÉADEL C., “Des savants et des sachants. De la production profane de connaissances”, in GLASSEY O., LERESCHE J.-P., MOESCHLER O. (eds), Penser la valeur d’usage des sciences, Éditions des archives contemporaines, Paris, pp. 153–168, 2013. [MEA 14] MÉADEL C., “‘Partager ma propre opinion’. La grippe H1N1: connaissances et échanges électroniques”, Le Temps des médias, vol. 23, no. 2, pp. 128–140, 2014. [PAS 18] PASQUIER D., L’internet des familles modestes. Enquête dans la France rurale, Presses des Mines, Paris, 2018. [PIE 10] de PIERREPONT C., “La sexualité post-partum dans les fora internet”, Civilisations, vol. 59, no. 1, pp. 109–127, 2010. [PRE 04] PREECE J., NONNECKE B., ANDREWS D., “The top five reasons for lurking: improving community experiences for everyone”, Computers in Human Behavior, vol. 20, no. 2, pp. 201–223, 2004. [RAB 00] RABEHARISOA V., CALLON, M., “Les associations de malades et la recherche: I. Des self-help groups aux associations de malades”, Médecine/sciences, vol. 16, pp. 945–949, 2000. [RAV 17] RAVOIRE S., LANG M., PERRIN E., “Intérêts et limites des communautés virtuelles de patients pour la recherche sur les produits de santé”, Thérapie, vol. 71, no. 1, pp. 125–134, 2017. [REN 08] RENAHY É., PARIZOT I., CHAUVIN P., “Health information seeking on the Internet: a double divide? Results from a representative survey in the Paris metropolitan area, France, 2005–2006”, BMC Public Health, vol. 8, no. 1, p. 69, 2008. [REN 09] RENAHY É., CADOT E., ROUSTIT C. et al., “Recherche d’information en santé sur l’internet: une analyse contextuelle des données SIRS, une cohorte parisienne”, Santé Publique, vol. 21, pp. 27–40, 2009. [RIC 15] RICHARD J.-B., Quelle utilisation d’internet dans la recherche d’informations en santé?, INPES, Paris, Journées de la Prévention et de la santé publique, available at: http://inpes.santepubliquefrance.fr/jp/cr/pdf/2015/Richard.pdf [accessed May 15, 2019], June 9–11, 2015. [ROM 12] ROMEYER H., “La santé en ligne”, Communication, vol. 30, no. 1, available at: https://journals.openedition.org/communication/2915#text, 2012. [SEU 18] SEUX C., “Les disparités sociales des usages d’internet en santé. Effets combinés des socialisations familiales et des sources informationnelles”, Réseaux, vols 208–209, no. 2, pp. 63–93, 2018.

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[THO 13] THOËR C., “Internet: un facteur de transformation de la relation médecinpatient?”, Communiquer, vol. 10, pp. 1–24, 2013. [TOP 15] TOPOL E., The Patient Will See You Now: The Future of Medicine Is in Your Hands, Basic Books, New York, 2015. [WEB 12] WEBER J.-C., “L’impact de l’Internet sur la relation médecin-malade”, Ethique & Santé, vol. 9, no. 3, pp. 101–106, 2012. [WIL 13] WILLIAMS C., RILEY S., “Finding support and negotiating identity”, RESET, vol. 2, available at: http://journals.openedition.org/reset/117 [accessed May 15, 2019], 2013.

7 Interferences and Territorial Conflicts: The Case of the Electronic Medical Record

7.1. Introduction Healthcare organizations are faced with the increasing computerization of their management and clinical activities [CON 07]. Several technologies cross each other, with different objectives and workflows. Thus, for example in France, the Shared Medical Record (SMR) aims to make available medical information (medical history, laboratory test results, imaging, ongoing treatments) from other health professionals (general practitioners, specialists, nursing or hospital staff) to health professionals, with the patient’s prior consent. The SMR thus focuses on sharing the information required for the management of a patient’s care among health professionals working in hospitals, private practices or other organizations throughout France. While the SMR aims to be implemented for inter-organizational coordination, the Electronic Medical Record (EMR) is an intraorganizational software, aiming to share information among health professionals in a particular organization. Depending on the configurations chosen by each organization, EMRs may include other modules in addition to the clinical modules (consultation and medical prescription, nursing module): laboratory results, operating room management, patient administration and invoicing [MOR 18]. EMRs have been implemented based on the Enterprise Systems (ES) model, related to the idea that                                         Chapter written by Roxana OLOGEANU-TADDEI and David MORQUIN.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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cross-functional information shared through a unique database avoids errors related to dual entry and reduces data redundancies. In this chapter, we will show how the functioning of EMRs, based on a common database, involves challenges for the organizations’ territories previously constituted in hospitals and requires a new reconfiguration of these territories. Indeed, French university hospitals are professional bureaucratic organizations [MIN 79] where the various departments work in silos [MOR 18]. Before the implementation of EMRs, administrative departments (i.e., Human Resources Management) and clinical services (i.e., Ophthalmology) used their own business software. These departments, and in general the clinical and administrative fields [CON 07], [MOR 18], had their own territories, i.e., their fields of activity. We understand this notion of territory in a similar way to that of the social world [STA 89], [TRO 09] in which actors share meanings and interpretations of reality. In an organization as formalized as a large university hospital, beyond the culture and socialization that differ from each other, these social worlds are formalized and borders are defined, with a more or less clear distribution of formal and informal power. The idea of territory is symbolically expressed by the use of the expression “walking on the flowerbeds” (of another actor, another department) when, at the boundary between several worlds, there is blurring of certain activities or objectives and actors from one world can, more or less voluntarily, “encroach” on the activities and objectives of actors from another social world. Thus, beyond its initial, spatial meaning, we are interested here in the notion of territory in a symbolic sense, which is understood rather in a holistic sense, across borders and interferences that reveal its existence. In this chapter, we wish to show that interferences between social worlds, in this case, the clinical and administrative worlds, appear through the use of EMRs in work practices. We use the term of interferences as a metaphor related to the definition of electromagnetic interferences defined as “the effect of unwanted energy due to one or a combination of emissions, radiations, or inductions upon reception in a radio communication system, manifested by any performance degradation, misinterpretation, or loss of information which could be extracted in the absence of such unwanted energy” (Article 1.166 of the International Telecommunication Union’s Radio Regulation). In the first part of the chapter, we will present the case study carried out in a hospital, allowing us to highlight these interferences. In the second part, we will put the results into perspective by insisting on the opposition between the logic of managerial rationalization and that of

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professional rationalization. We will argue that this opposition is a mechanism of the observed interferences. 7.2. Theoretical framework The integration of several information systems through an ES is a specific technical-organizational phenomenon [VOL 05] that has justified the attention of researchers for several years. Generally, authors have shown that the reconfiguration of work practices and processes required by the use of an ES to meet the desired objectives during implementation is insufficient [TAL 16]. Some highlighted the negative consequences, in terms of work practices and costs, of the adoption of an integrated ES in non-integrated organizations. Gattiker and Goodhue [GAT 02] have shown that integration becomes more complicated and the realization of benefits more difficult if the services (or departments) are highly differentiated in an organization. Functional differentiation, characterized by differences in data definition, business processes, objectives, time horizons, trade-offs between real-time and accuracy, and the degree of detail of the data, was considered an obstacle to the use of an ES according to the desired objectives [VOL 05]. In this sense, Volkoff [VOL 05] gave the example of a finance department that needed real-time access to data processed during a production process, regardless of whether or not the process could be completed. The standardized definition of data imposed by finance facilitated the work of the finance department but made it very difficult to continue the production process [VOL 05]. According to Volkoff [VOL 05], this example can be considered as pooled interdependence as defined by Thompson [THO 67]. However, pooled interdependence refers to information sharing among different groups of employees without the definition of data from one group prevailing over the other. We believe that the situation where information sharing results in a deleterious change for one of the user groups in the definition of data or process objectives corresponds to interference between information systems, by analogy with the dual interference of tasks [HEN 06]. The empirical evidence presented below is intended to support this proposal. Moreover, it can be expected that the differentiation will be even greater in hospital organizations [GLO 01], where the triple hierarchy – administrative, paramedical and medical [VEN 11] complicates the professional bureaucracy described in the literature [MIN 79]. Beyond the

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issues of power and loss of autonomy that can lead physicians to show greater resistance to the introduction of IT that changes their work practices [LAP 05], [VEN 11], we can question the link between differentiation in hospitals, resulting in different situations in terms of data definition and data accessibility, and interference of information systems. This approach allows us to highlight two aspects: 1) there is competition between two services (or departments, or groups, or social worlds), in terms of objectives and definitions of data in the ES that can lead to decreasing performance of one or both groups; 2) interference can be negative consequences not intended by the actors [MAR 94]: while in some cases, for example, the management board of a company may arbitrate in favor of one objective rather than another, this arbitration may not be achieved and competition or interference between two objectives and between two definitions of data (i.e., two different information systems despite technical integration) are not consequences of intentional behavior. 7.3. Case study We present here an interpretive case study, including three situations in the same hospital, which is a French university hospital that we will call Alpha Hospital. 7.3.1. Context In Alpha Hospital, EMR for clinical patient management was implemented in 2012. It includes the following modules: drug prescriptions, nursing record, medical record, input of procedures and Activity Based Costing, planning of examinations and appointments, and biology and imaging results. It is an integrated system interfaced with the patient administration software. Various actors are involved in the operation of the EMR. The staff of the Information Systems Department (DSI) is in contact with the editor and the data host for the management of updates, breakdowns, malfunctions and new developments, but is autonomous for the production of medical questionnaires (forms allowing the structuring of the input of information for a type of clinical process), prescription protocols and a large number of settings and requests. The Medical Informatics Department (DIM) processes medical data for the purpose of invoicing and analyzing medical and

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economic activity and monitors logs into EMR. The Delegation for Hospital Information (DIH) defines the management of EMR access rights, proposes actions to improve and structure EMRs and makes numerous settings in connection with the DSI to promote the adjustment and consistency of EMR with the needs of clinicians. No cross-functional governance bodies (e.g., strategic committee) associated with the EMR were implemented in the four years following implementation. 7.3.2. Methodology Data collection was carried out by an external researcher (first author of the paper) between December 2014 and November 2016 from different sources: observation of meetings, memos of meetings and emails sent by participants of these meetings. These data were structured according to the meeting’s objective, as stated by the meeting initiator, and were kept for subsequent meetings. The meetings on the first two topics were initiated by the doctor in charge of the DIH, in charge of the clinical adaptation of EMRs; the meeting concerning the change in invoicing rules was proposed by a doctor from the DIM. The observations were the subject of handwritten notes which were then computerized. Methods of data collection are summarized in Table 7.1.

Situation 1

 

Elements of conflict

Type of data

Actors

Indexing of documents related to closed hospital stays

Observations of the two specific meetings (duration: two hours each) Observations of two two-hour meetings of the EMR Structuring Committee Five emails Two reports from the EMR Structuring Committee

DIH, DSI, Admissions Department, Quality Department, DIM, Care Department, Medical Secretary Coordinators

 

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Situation 2

Creation of preadmission stays

Observations of the two two-hour meetings Eight emails One working document (inventory carried out by the Pharmacy division)

Situation 3

Fragmentation of the EMR according to invoicing regulations

14 emails One internal document – memorandum

DIH, DSI, Admissions Department, Monitoring of Patients’ Identities Unit, DIM, Pharmacy Division

DIH, DSI

DIM,

doctors,

Table 7.1. Data collection

The data were analyzed according to the principles proposed for interpretative studies [KLE 99], [WAL 06] resulting in stories [WAL 06] for each meeting objective. The main analytical criterion focused on exchanges and negotiations around the configuration of EMRs according to clinical or management concepts and indicators. Given the specific nature of the processes covered by the meetings, the external researcher asked the head of DIH, also a researcher in management sciences (and second author of the article), for clarifications on certain discussions during the meetings. 7.3.3. Case study situations 7.3.3.1. Indexing of documents related to closed hospital stays Stays (period of hospitalization time) or patient movements (switching from one medical department to another) were created by mistake, in the EMR, by various actors and for different reasons: the apportionment of the stay was entered for the wrong unit, at the wrong date or on an incorrect patient identity. The number of different identities recorded in the database is more than 2 million and, for example, the duplicate rate is estimated by the institution at about 1%. The correction of these errors, i.e., the elimination of inappropriate stays or movements, is necessary for invoicing, based on the rules imposed at the national level by the responsible ministry

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through the Facturation Individuelle Des Établissements de Santé (individual billing of health establishments), FIDES. Of the 3,000 files deleted in 2015, 440 included elements containing clinical information (results, input questionnaires or scanned documents); this number doubled in 2016. When these erroneously created stays were edited, the documents recorded on this stay in the EMR remained, but no longer appeared in their respective areas (images, biological results, reports, etc.) in the main summary view of the file, but in a separate area called “deleted items.” The DIM employee in charge of manually removing these erroneous stays considered that the manual work of re-indexing these documents on a unitary basis was too costly to carry out in a systematic way. Therefore, the head of DIH initiated meetings to define the rules for indexing documents relating to closed stays in order to answer the following question: how and who should re-index the documents (including laboratory results, medical history or prescriptions) from the deleted file into the correct file? In the absence of the development of an automated solution for largescale file re-indexing by the EMR editor, meetings on this subject led to a compromise request to rename the file from “deleted items” to “unclassified items,” in order to alert doctors and paramedics that potentially useful documents can be indexed in this file and should be consulted. The editor refused this change because it was too costly. The medical consequences of this lack of change were summarized in the following alert email, sent in 2016 by a hospital doctor, professor and head of a medical department, to the head of DIH. Some files in the EMR may have a separate section on “deleted documents.” Considering the title, you might think there’s nothing in it! However, it sometimes contains important patient information. We don’t always think about looking inside and we don’t find the required results. I think the file should give access to all results directly without computer or administrative division.

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7.3.3.2. Indexing documents or entering anticipated prescriptions before the patient is admitted to hospital DIH doctors in agreement with pharmacists wish to be able to carry out computerized prescriptions in advance before the patient is admitted to hospital, which requires the creation of pre-admission stays according to a functionality required in the EMR. For pharmacists, this operation makes it possible to anticipate the management of drug logistics for day hospitalization and consultations. For example, for patients with rheumatoid arthritis, treatment is based on expensive molecules; if stock is not anticipated, the patient treated in the morning waits until the afternoon for a drip, as the prescription can only trigger pharmaceutical validation and then the delivery of the drug when the stay has been validated upon admission. The creation of pre-admission stays also would make easier “the anesthetist’s life,” particularly in outpatient surgery to prepare for the arrival of patients: the doctor then plans to initiate treatment or the carrying out of a biological check-up (the results of which may condition the green light to put the patient under anesthesia) or an examination, without having to wait until the patient has physically arrived. However, the creation of these pre-admission stays is contrary to the invoicing rules set up by the admission service and has therefore been inactivated during the implementation of the EMR. DIM and Admissions Control were concerned that these pre-admissions may generate duplicate files (for example, if the patient does not arrive or arrives late, which requires the creation of a new stay) requiring regular “cleaning” of the EMR, as for the duplicate files previously presented. Several meetings involving employees of this department, DIH physicians and pharmacists and the Admissions Department took place, but they did not lead to any consensus and, consequently, to any decision to be withdrawn. The lack of possibility to use pre-admission stays also has other consequences. For example, when a medical secretary makes an appointment for a patient who is not known in the database and the patient provides them with a document of medical interest (such as the letter from the attending physician requesting the consultation), if it is not possible to create a stay at an early date, the secretary cannot record this document in the patient’s file. A workaround solution is then used, consisting of annotating certain information on the appointment scheduling module with an attachment,

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which then requires re-entering the information or re-indexing the document in the right place when the patient arrives. Another example is related to patients with planned iterative treatment that warrants regular visits to the hospital, including patients with renal insufficiency who receive dialysis three times a week. Even if the treatments are planned and known in advance, the stay is automatically closed at each visit, and the prescriptions are therefore changed to “canceled” status and must be reactivated at each session. The drug circuit is then blocked, and the pharmacy only visualizing “open” stays cannot anticipate the needs of the care unit before the very same day. This request was relaunched during the project to optimize bed management for outpatient surgery. The main problem is that the interface between the EMR and the patient administration software (which had existed prior to the implementation of the EMR) for establishing stays, and therefore invoicing, has been designed to promote the completeness of invoicing data at the expense of the ability to enable some EMR functionalities. 7.3.3.3. Fragmentation of EMRs according to invoicing rules A new ministerial circular published in 2016 modifies the billing methods for visits to the ER and applies from January 1, 2016 (retrospectively): it requires the generation of a hospital stay in the ER followed by hospitalization in another department in other geographical entity (than that of the ER). These new billing rules are advantageous for Alpha Hospital, whose large number of patients are hospitalized in a geographical entity other than the ER. The settings for visits to the Emergency Room are therefore changed by the DIM from “stay” to “consultation” status when a patient is then hospitalized in another geographical location. The main consequence of this new configuration decided without coordination with doctors is a change in the display of the patient’s file. For a patient hospitalized in the same hospital, medical and paramedical staff will consult all the information in a single view called a “routine stay.” In the case of hospitalization in another geographical entity, doctors and paramedics will have to collect the results of the examinations requested from the ER in the “previous stays”. Three pediatricians responded by highlighting the consequences for their departments. One of them summarizes the consequences of this change as follows:

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“I wanted to point out a few things since the new admission methods for patients admitted to hospital from the ER: – Patient reports from the emergency room are no longer displayed on the patient’s current stay. – Observations made by the on-call intern in the EMR software from the emergency room do not appear on the patient’s stay either. – EMR prescriptions performed while the child is in the emergency room are not transferred to the patient’s new stay. The entry observation written by the on-call resident cannot be used in the automatic email generated from the patient’s summary: the medical summary must be rewritten entirely, because it is not the same stay. (So it’s work for nothing.) For prescriptions, the resident, or the doctor, once the patient is hospitalized in a department, must select the prescriptions made during the emergency room stay and “transfer” them to the current stay. Do you think it is possible to ‘simplify’ all this?” The DSI offers partial bypass solutions to create the hospital stay at the remote site as soon as a hospital stay is confirmed from the emergency room, allowing doctors to prescribe and enter information on the hospital stay and not on the emergency room visit. 7.4. Discussion The case study presented highlights the fact that billing rules prevail in the architecture of Alpha Hospital’s information system, resulting in a decrease in the readability of EMRs and the risk that physicians will not find important clinical information, either because of the failure to index information in the right areas (Situation 1) or because of fragmentation of the EMR at the expense of clinical effectiveness (Situations 3, 4). In Situation 2, the quality of data for invoicing is considered as the main objective, while anticipating management through pre-admission could paradoxically allow a certain rationalization of patient management, by reducing waiting time. In this situation, the organization of a medical work routine, i.e., the early management in anesthesia consultation of the preoperative period aimed at preparing prescriptions and the assessment to be carried out on admission for an operation cannot be optimized because of the risk of error arising in recording of hospital stays.

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In all situations, the management objectives lead to a modification of work routines designed to manage unpredictability and singularity [GRE 08] and to an alteration in the adequate representation of medical information and therefore in the ability of physicians to typify cases (cognitive dimension of professional rationalization). These interferences can be explained by the competition between the logic of managerial rationalization and the logic of professional rationalization. Indeed, Pascal [PAS 03] highlights the “rationalization challenge” faced by the manager wishing to control the hospital system, involving formalization and stabilization of the management processes and the optimal allocation of resources necessary for these processes to achieve outcomes. However, the formalization of these processes is considered differently by careers, through protocols, and by administrators, through procedures; protocols are related to professional rationalization [GAD 94]. Professional rationalization is composed of a cognitive and an institutional dimension. Cognitive professional rationalization refers to the typification (types) of cases, the relative formalization of problem-solving processes (or intellectual methods) and the use of a set of routines that individuals may have acquired on a personal basis but that often exist as collectively diffused skills within and through the organization [GAD 94]. The institutional dimension focuses on the process of enacting rules concerning the entire profession [GAD 94]. The difference between these types of work formalization is found in the opposition of two conceptions concerning the value of health services: industrial rationalization focused on the search for efficiency, and professional rationalization on clinical effectiveness [GAD 94], [PAS 03]. The first vision of rationalization refers to what some authors call managerial rationalization [BIE 11], [ENG 00], [MIN 03], i.e., a bureaucratic rationalization logic focused on measuring costs and performance (DIH, DSI, Quality Department, DIM, Care Department, Medical Secretary coordinators). It is based on the design and introduction of technicalmanagement systems, most often designed without taking into account the specificities of professionals’ work, which can lead to problems linked to professional logic, whose requirements are centered on the very content of the activity and not on the volume [BIE 11]. In the case study presented, the EMR enables the centralization and processing of data related to the monitoring and traceability of resources, such as beds, drug stocks, consumables, technical platforms, operating rooms or human resources, which depend on the objectives of the personnel performing a management function within the hospital (administrative staff,

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department medical manager, senior health manager). In France, the Projet de médicalisation des systèmes d’information (PMSI), which aims to calculate the budget allocation of institutions according to the international method of Activity Based Costing, led to the implementation of activitybased pricing from 2005 onward. This method is based on the classification of patients into a deliberately limited number of stay groups with similar medical characteristics and similar costs. This system is essentially based on the processing of information from each patient’s records and is therefore dependent on the quality and availability of this information, i.e., how it is structured within the database and how it has been entered by the user. As pricing is carried out during the stay, there is a link between the administrative file describing hospital invoicing and the patient file determining, by the PMSI and the acts performed, the billing of medical activity. In addition, the EMR can cover planned patient examinations, including not only access to technical platform resources (availability of operating rooms, social workers, etc.) but also the management of available beds and physical flows. The conflict between the managerial rationalization logic [PAS 03] expressed through billing rules, and professional rationalization (through routines requested by clinicians and pharmacists, in Case 2) is only possible because of the integration of administrative and clinical information systems, in and through EMRs. However, there is no aim to rationalize the doctors’ work in terms of industrial or managerial rationalization, either by the DIM or the Management Control Department or the Admissions Office. However, through these rules for classifying patients’ stays, there is a certain rationalization of patient care, without going into detail about the methods or paths to be followed for this care. This goes against clinical efficacy as promoted by physicians [PAS 03]. These consequences on the work of doctors and, ultimately, of the management of patient care, are indirect, negative and undesirable effects and for which the discovery of the consequences is most often made a posteriori. The consequences on physicians’ work routines are difficult to grasp. For example, it was during meetings with the various actors (DIH, DIM) that pediatricians discovered the link between changing billing rules to the geographical entity and reorganizing the structure of EMRs. While a large part of the literature on hospital organizations and the integration of information technologies has been devoted to the intentional rational behavior of actors (in particular resistance by doctors and

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workaround behavior [SAL 11]), we insist on the unintentional nature of such interferences. In this sense, these are not more or less intentional power conflicts. These interferences within the information system between different worlds, in this case the clinical and administrative worlds, reveal the absence of the construction of the EMR as a boundary object between social worlds [STA 89], namely, a hybrid arrangement, allowing the sharing of meanings and interpretation between the different worlds using the EMR. 7.5. Conclusion We have shown that the integration of the EMR has led to interferences between the objectives and definitions of data for billing and patient care. We have argued in favor of the existence of an underlying mechanism, namely, the opposition between managerial rationalization and professional rationalization, described in the literature but not studied in relation to information systems. This is not so much the conflict inherent in the professional bureaucratic structure [MIN 79], between a logic of bureaucratic rationalization based on control through the standardization of rules and procedures on the one hand, and professional autonomy on the other, but between two different rationalization visions, which lead to interferences into the EMR, in turn leading to a decrease in the efficiency of the work of operational staff (in our case, doctors for the care of patients) and the clinical efficacy. Thus, the interference between the “social world territories” supported by these logics shows the need to create boundary objects. 7.6. References [BIE 11] BIED M., METZGER J.-L., “Comment les logiques de rationalisation du secteur médico-social peuvent-elles soutenir les pratiques collectives des professionnels?”, Management & Avenir, vol. 7, pp. 165–183, 2011. [CON 07] CONNELL N.A.D., YOUNG T.P., “Evaluating healthcare information systems through an ‘enterprise’ perspective”, Information and Management, vol. 44, no. 4, pp. 433–440, 2007. [ENG 00] ENGEL F., KLETZ F., MOISDON J.-C. et al., La démarche gestionnaire à l’hôpital: le PMSI. La régulation du système hospitalier, Seli Arslan, Paris, 2000.

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[GAD 94] GADREY J., “La modernisation des services professionnels: rationalisation industrielle ou rationalisation professionnelle?”, Revue française de sociologie, vol. 35, no. 2, pp. 163–195, 1994. [GAT 04] GATTIKER T.F., GOODHUE D.L., “Understanding the local-level costs and benefits of ERP through organizational information processing theory”, Information and Management, vol. 4, no. 4, pp. 431–443, 2004. [GLO 01] GLOUBERMAN S., MINTZBERG H., “Managing the care of health and the cure of disease—part I: differentiation”, Health Care Management Review, vol. 26, no. 1, pp. 56–69, 2001. [GRE 08] GREENHALGH T., “Role of routines in collaborative work in healthcare organisations”, British Medical Journal, vol. 337, pp. 1269–1271, 2008. [HEN 06] HENINGER W.G., DENNIS A.R., HILMER K.M., “Research note: individual cognition and dual-task interference in group support systems”, Information Systems Research, vol. 17, no. 4, pp. 415–424, 2006. [KLE 99] KLEIN H.K., MYERS M.D., “A set of principles for conducting and evaluating interpretive field studies in information systems”, MIS Quarterly, vol. 23, no. 1, pp. 67–93, 1999. [LAP 05] LAPOINTE L., RIVARD S., “A multilevel model of resistance to information technology implementation”, MIS Quarterly, vol. 29, no. 3, pp. 461–491, 2005. [MAR 94] MARKUS M.L., “Electronic mail as the medium of managerial choice”, Organization Science, vol. 5, no. 4, pp. 502–527, 1994. [MIN 79] MINTZBERG H., The Structuring of Organization: A Synthesis of the Research, Prentice-Hall, Upper Saddle River, NJ, 1979. [MIN 03] MINVIELLE E., “De l’usage de concepts gestionnaires dans le champ de la santé”, Revue française de gestion, vol. 5, pp. 167–189, 2003. [MOR 18] MORQUIN D., OLOGEANU-TADDEI R., “Formalisation habilitante versus coercitive: le chaînon manquant pour comprendre le bilan mitigé du Dossier Patient Informatisé dans les hôpitaux”, Management & Avenir, vol. 2, pp. 165–187, 2018. [PAS 03] PASCAL C., “La gestion par processus à l’hôpital entre procédure et création de valeur”, Revue française de gestion, vol. 5, pp. 191–204, 2003. [TAL 16] TALLON P.P., COLTMAN T., QUEIROZ M. et al., “Business process and information technology alignment: construct conceptualization, empirical illustration, and directions for future research”, Journal of the Association for Information Systems, vol. 17, no. 9, p. 563, 2016. [THO 67] THOMPSON J.D., Organizations in Action: Social Science Bases of Administrative Theory, McGraw-Hill, New York, 1967. [TRO 09] TROMPETTE P., VINCK D., “Revisiting the notion of boundary object”, Revue d’anthropologie des connaissances, vol. 3, no. 1, pp. 3–25, 2009.

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[VEN 11] VENKATESH V., ZHANG X., SYKES T.A., “Doctors do too little technology: a longitudinal field study of an electronic healthcare system implementation”, Information Systems Research, vol. 22, no. 3, pp. 523–546, 2011. [VOL 05] VOLKOFF O., STRONG D.M., ELMES M.B., “Understanding enterprise systems-enabled integration”, European Journal of Information Systems, vol. 14, no. 2, pp. 110–120, 2005.

8 Professional Practices and Organizational Issues. The Case of Medical Regulating Assistants

8.1. Introduction While research on emergency services (psychiatric, medical, etc.) is developing in human and social sciences [MOR 14], [SIC 09], [THO 10], few studies focus on Emergency Medical Assistance Services (called SAMU in French for Service d’aide médicale urgente). This study is part of the EQU 2 (Ethics, Quality, Emergency) university project funded by the Université de Lille and conducted in collaboration with the STL (Savoirs, Textes, Langage) laboratory and the SAMU at the Arras hospital center1. While initially, the researchers responded to a command aimed at optimizing the identification of the emergency during a phone call, very quickly the organizational and functional problem emerged as a key point to be questioned. In particular, the status and functions of the Assistant de regulation médicale (ARM, medical regulating assistant) were the focus of our attention. The ARM is the first point of contact for people who dial 15 or 112 in France on their phones. They initiate the management of the patient file by                                         Chapter written by Aurélia LAMY, Céline MATUSZAK, Eric KERGOSIEN, Natalia GRABAR and Pierre VALETTE. 1 In collaboration with the Laboratory STL, the EQU research program involved six lecturers in information and communication sciences from the GERIICO laboratory at the Université de Lille: Bernard Jacquemin, Eric Kergosien, Amandine Kervella, Aurélia Lamy, Céline Matuszak, and Florence Thiault.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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the department – a file also called the regulation file. It is created when the first telephone contact is made with the caller or on the basis of information transmitted by the operator of the SDIS (Service départemental d’incendie et de secours), the departmental service for emergencies and assistance. The operator is then in charge of completing the factual information (medical history, expression of symptoms) and identity of the callers (address, name, contact details). This file will then follow the patient’s care, used by the regulating doctor or any other emergency service requested. The prerogatives and autonomy margins of the ARM may vary from one center to another. At the Arras hospital center, they are likely to make some decisions depending on the context and the way the call is described: advising on the implementation of basic survival measures and guidance, sending help (SMUR accompanied by a private ambulance or fire brigade), transferring the call to a general practitioner at the ambulatory care center (PDSA), for example. In the case of claimants, ARMs are involved in an “administrative emergency relief relationship” as well as a “service relationship” as identified by Mélanie Hénault-Tessier and Sophie DalleNazébi [HÉN 12]. This profession, at the heart of the SAMU’s operations and prerogatives, is therefore at the crossroads of emergency medical care services. The analysis we are proposing today is the result of an ethnographic survey conducted at the SAMU of the Arras hospital center in 2015–2016. This in situ analysis of actual professional practices was carried out by direct observation. The researchers spent several days immersed in the SAMU regulation room of the Arras hospital center. In addition to the dual-purpose observations that made it possible to identify the problems that ARMs are constantly confronted with, we opted for direct observation. This method allowed the fine analysis of complex, circumscribed spaces [GRO 99]. The objective of these observations was to understand the interactions in a professional context and the posture adopted by ARMs in a workspace located in the control room (use of tools, margin of autonomy, gendered practices, etc.) at various times of the day (morning, afternoon, night) and week. Alongside these observations, we met individually with voluntary ARMs in semi-directive interviews on their working time. The objective was to identify, through life stories, the career paths (personal and professional) of ARMs as well as their understanding of the profession and their commitment to the professional activity. While this method effectively presented biases relating to sociological and ethnological approaches

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(presence of the researcher in a workplace likely to modify the attitude and practices of actors, “unspoken” risk for interviews taking place in the workplace, and so on), it was nevertheless fruitful in that it made it possible to question both work situations and the professional dispositions, positions and trajectories of the workers, and the technical and relational skills of ARMs [HÉN 11]. We thus propose an analysis of the professional practices of ARMs in context by studying the management of the patient regulation file and we are interested in how its internal management in the regulating room leads to the shaping of the ARM profession characterized by multiactivity. Like DalleNazebi and Hénault-Tessier [HÉN 12, p. 93], we question the manufacture of information by medical regulating assistants and more particularly “the circulation of information as an element participating in the construction of a shared workspace that operators mobilize during their cooperation and coordination actions”; we wish to pursue these reflections by working on how this information is also manufactured by the global organization of the service. 8.2. The medical regulation file at the heart of the service’s activities A medical regulation file is a tool for centralizing information on patient care, at the Arras hospital center it is enrolled via the Centaure software. Both administrative (collection of administrative data: name, address, place) and medical (qualification of the problem, symptoms), it appears as the guiding principle of patient care. It ensures that the emergency is properly identified and that appropriate resources are sent – or not; it also helps to define all the activities associated with patient care, to coordinate the actions of the actors involved, to guarantee the traceability of decisions and to enable their control. The regulation file is also an element for evaluating the service’s activity, for this purpose a bright screen makes it possible to monitor in real-time in the workroom the quantified global regulation activity (duration of calls, number of calls handled, number of calls lost, response time to a call, accumulation over the year). It appears as much as a decision-making tool, because it allows ARMs to assess the response time of regulating doctors to ARM requests, as it is an element of motivation at work, in that it makes it possible to measure the service’s collective activity.

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8.2.1. Summarizing information without distortion To initiate the regulation file, the ARM completes a call sheet. From a brief interview (What happened? What is your age? What is your name? Where are you hurting?), the collected data transcribed in real-time create information that enables follow up on the caller’s request. Fall – shoulder trauma – suspicion of dislocation Shoulder No discomfort Pale (Elements from the computerized call sheet, observations dated March 4, 2016) This call sheet, as a place for transcribing and sharing of information involving action, refers to what Josiane Boutet calls “the interdependence between verbal activities and tools, machines, technologies; interdependence between the different modes of reality representation that are speech, writing, figures, tables, graphs, models: all these phenomena construct specific modes of contextualization of verbal activity within the contexts of action” [BOU 08, p. 124]. The framework [JEA 99] she proposes determines and regulates the interview with the caller. It automates a series of questions and answers to enable quick and appropriate decision-making. To optimize the collection of factual and identity information, the call sheet has drop-down menus to optimize the information report through a number of items such as: – the purpose of the call: transfer to the regulating doctor, hospital regulation, (CRRAL permanent care in liberal medicine), sending SMUR resources, etc.; – the request for intervention: fire brigade, police, private individual, private ambulance, private nurse, etc.; – the place of intervention: public place, workplace, school, prison, tunnel, shelter, etc.; – the type of intervention: CO poisoning, chest pain, obstetrics, social emergency, stroke, domestic accident, brawl/aggression, etc. The ARM notes this information to optimize the patient’s care by the regulating doctor. This phase of data collection from the caller should not be interpreted in any way: “The ARM must adopt a physical attitude of

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availability, exclude preconceived ideas and interpretation, and remain neutral and benevolent on each call” (Extract from the reference document, ARM, June 2016). However, in practice, the ARM “translates” the caller’s words into terms that can be understood by the regulating doctor, more than just taking notes “on the fly”; entering data, the ARM must ask the right questions at the right moment to obtain the information necessary for rapid and effective management. Faced with the caller’s stress, lack of perspective and knowledge, the ARM is also often required to rephrase comments or ask questions several times before being able to obtain an adequate answer. Finally, he or she must be able to “name” the signs and symptoms stated by the caller using precise and clear medical terms that can “speak” to the regulating doctor. Summarizing without distortions, because (…) if the summary is good, the regulating doctor can almost make a decision immediately. If there are distortions, they can make bad decisions. If we say that the person is fine when he or she is not (…) we can interpret very well and then (…) pass on the wrong information. So that’s very important to be able to summarize the information without distortion. (ARM, male, 26 years of experience) While the use of the medical terms and on-the-fly note-taking do not seem to pose a problem for ARMs who intensify their practice as their experience grows, the main difficulty lies in transferring this information to the regulating doctor. Indeed, we observed (and the interviews conducted with the ARMs confirmed our observations) that, depending on the regulating doctor, the comments transmitted may be different, as the way they are transmitted. Indeed, if the terms used do not vary a priori (the same term for the same symptom), the choice to include this or that element may vary with regard to the expectations of the regulating doctor in place. Some wish to regulate as many calls as possible, others prefer to leave a greater margin of autonomy to the ARMs and focus on “real emergencies,” in this case, the ARM must identify transferable calls. In addition, there are other constraints linked to regional specificities, which complicate this exercise: the use of a local dialect, strong accent, calls in foreign languages which sometimes require the intervention of a translator (Flemish, English, or other). Finally, some calls are difficult to qualify in that they do not concern an identifiable pathology but social distress, requests of isolated people, etc. These situations are not described as “emergencies” but require the service to take care of them.

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8.2.2. Beyond input: Relational work This characteristic aspect of “relational work” [DEM 08] specific to the sector is not present within the technical system. The computer equipment cannot account for this, yet it is essential to the achievement of the ARM mission. This relational work is difficult to measure and is not made visible in the definition of the function and the expected skills: “Information work is multiplied and at the same time denied in its legitimacy and in this way referred to what cannot be seen” [MAY 12, p. 122]. This work of producing information in an interactive situation is therefore much more complex than it seems. Mayère et al. [MAY 12, p. 123] also point this out with regard to nurses’ work in the management of patient files: “It should be noted how much the term ‘data’ implies a lack of reflection, as well as the term ‘input’ which refers to manipulation. No thought is required for a job that can therefore be done with ‘small hands,’ the only attention of which must be focused on the correct transcription of this ‘data.’” In addition, in the SAMU of the Arras hospital center, even if it is almost always in the decision-making chain, the activity is such that the ARMs are required to take care of a number of calls without having recourse to the regulating doctor2. This practice is not the same in all SAMU services. Indeed, when it comes to defining the profession, an ARM is only an intermediary and the doctor makes the medical decisions about a patient, they are an “agent” of the emergency services. As part of the observation of social networks, we were able to regularly interpret this professional posture which involves affirming the profession specificity: We are not “switchboard operators” but medical regulating assistants. We have skills that are not recognized. We are the first link in the medical relief chain. Our skills are not recognized. We are angry and I am completely with them. [Facebook post following the publication of articles about a protest movement at the SAMU in Seine-Saint-Denis (93) in December 20183]                                         2 At the time of the survey, the SAMU at the Arras hospital center had 37 permanent ARMs (we do not count here the trainee ARMs, for example) that handle about 630,000 calls per year. The ratio of regulating doctors to ARM is insufficient, however, if not all calls are regulated, a large number of cases are (each case results in several calls). 3 This situation is reflected in Le Parisien in an article published on December 23, 2018 entitled Seine-Saint-Denis, grève annoncée au SAMU, une réunion est prévue ce lundi (SeineSaint-Denis, strike announced at SAMU, a meeting is scheduled for this Monday), article

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Faced with increased demand and a constantly changing number of callers, the ARMs of the Arras hospital center handle calls that they consider to be non-urgent, falling under what they call “bobology”. We give advice, bobology, we reassure, we do a little psychiatry (…) So, they won’t just have calls that are difficult to manage: they will have very easy things. (ARM, male, 26 years of experience) When it comes to bobology, the ARM provides advice, and in this case their experience influences their professional practices: the more experienced the ARM is, the better able they are to identify and handle this type of call. The same applies to calls made in the event of an emergency requiring immediate medical treatment. In this case, in accordance with national protocols that allow them to do so, the ARM may decide to send the resources (SMUR, ambulance, fire brigade) to the first instance by informing the regulating doctor. The data collected should help them to “rationally choose a good option” [GRO 10, p. 31]. This decision is more than administrative in nature; it can be assimilated into a medical decision in the sense that the ARM assesses the symptoms evoked by the caller to decide whether or not the situation has to be considered as an emergency. 8.2.3. A mediation system that participates in the definition of a place report The medical regulation file (DRM, dossier de régulation médicale) is at the interface between the ARM, the regulating doctor and the associated emergency services (e.g., fire brigade). Recorded in the medical regulation file, the information is built up as it is appropriated by the various stakeholders (ARM, regulating doctor, SAMU doctor during the report, etc.). The technical devices proposed in the execution of the function, therefore, contribute to defining a space relationship within the SAMU: On-screen texts are framed by formats, access codes, authorized fields of intervention, which formally record in the machine the                                         available at: http://www.leparisien.fr/seine-saint-denis-93/seine-saint-denis-greve-annoncee-ausamu-23-12-2018-7975359.php (accessed on 01/02/19). France Infos also addresses it in a report entitled Seine-Saint-Denis: grève du Samu à Noel (Seine-Saint-Denis: Samu strike at Christmas) and broadcast at the following address: https://www.francetvinfo.fr/sante/hopital/ seine-saint-denis-greve-du-samu-a-noel_3114143.html (accessed on February 1, 2019).

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authorizations and authorities, in that the professional personnel can become authors, what they can or cannot record. (…) It is then a matter of de-individualizing through the form of screen writing, which the format assumes as independent and personal parallel writing. [MAY 12, p. 135] As regards the medical regulation file, it is open to everyone (ARMs, doctors, emergency services), so the system does not induce a position of authority through authorizations that may or may not be granted to certain users. However, constant access to the files induces control postures by regulating doctors who can at any time question an ARM about its management of a calling situation, this questioning can be done almost directly, aloud in the workspace and during activity (the ARM in a call taking situation can be orally questioned by the regulating doctor or their referring ARM4). This omnipresence of an authority figure in the workspace and the adjustments faced by ARMs (e.g., whether or not to make a call) make it difficult to carry out their mission. Finally, the technical system tends to clearly define the role of each person, in that the ARM stops as soon as the file is transferred to the regulating doctor, even if in reality we observe that the majority of them seek to discover the purpose of a patient’s care and take advantage of gaps in activity or breaks to consult the files of the patients they have regulated. Thus, if the system induces place relationships and functions that constitute the ARM profession, a large part of the function is exercised outside any system and finds an echo in the “service relationship” identified by Mélanie Hénault-Tessier and Sophie Dalle-Nazébi [HÉN 12]. 8.3. Around the DRM (regulation file): Multiactivity at the service of efficient patient care The ARM profession requires multitasking: the ARM is constantly in a “situation of dispersion” [DAT 13]: “situations where people are frequently called upon to reconfigure their activity in the face of a constantly changing work environment,” they work to link media, information, and contacts [GRO 99]. This multiactivity is assessed at the level of the organization itself – in the same open space we find the CRRAL, the SAMU 15,                                         4 The referring ARM is often an ARM with significant experience; they are the persons who help other professionals in a situation that is complicated to define and/or manage. They participate in the training of new ARMs and may be called upon to handle calls in the event of heavy service activity.

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independent regulating doctors, emergency regulating doctors, ARMs, referring ARMs, ARMs organizing the sending of resources – and at the individual level. 8.3.1. At the individual level At the workstation of an ARM – that is not personal/customizable since the ARM has no assigned workstation and can sit wherever they wish in the open space – the tools induce varied and concomitant activities. Sociotechnical devices that take into account the constraints of rationalization of medical care (protocols) include, for ARMs and regulating doctors, a fixed telephone, three to six screens and a keyboard, a procedure reminder file and a headset worn at all times. With a headset, the ARM can hear the phone ring (it does not ring in the open space). They answer the call by opening a new regulation file at the same time, in which the telephone number is displayed almost immediately. This prevents the conversation from being disconnected before the caller can even be identified. Then, their attention is concentrated and dispersed between active listening to the caller (headphones with automatic answer), filling in the regulation file (one screen), consulting the availability of means (one screen) and related information (e.g., searching for information on the Internet, consulting a list of ambulances in the sector concerned to send the means as quickly as possible, etc.). However, this dispersion of activity and attention is handled by the organization, which proposes to the ARM an anchoring of the necessary information on a defined space, the workstation and the software being designed to work together, “via the different technical devices set up, the organization equips the scheduler [here the ARM] to help them to handle the multi-activity on a daily basis” [DAT 13, p. 10]; However, the limitations of this information system, which faces the problem of adaptability to emergency situations, quickly appear. Indeed, on many occasions during our observations, the ARM had to request additional information from the referring ARM or his colleagues, he also had to exchange with the regulating doctor informally regarding a caller. This production of information in the management of a regulation file constitutes a “complex phenomenon both linguistically and in terms of content” [DUC 04] and reinforces the attention requirements of multiactivity and accelerates the pace of concurrent activities.

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These activities are carried out according to different timeframes, which oblige the ARM to set the pace of their working time in line with the requirements of the service. The technical and material mechanisms relating to the ARM’s activity muddle different, shortened time frames in terms of expectations regarding processing times and the time required for the execution of operating chains required for a consultation. The presence of these multiple resources and the ease with which workers can mobilize them lead to plural and increasingly interrelated uses. Multiactivity trends, risks of dispersion and cognitive overload are increasing as well. [DAT 07, p. 10] Experience makes it possible to put these risks into perspective since the more experience the ARM acquires, the fewer resources they require. For example, several years of practice allow the ARM to have a good knowledge of the territory, so it is no longer necessary to consult the regional maps to know the name of the ambulance closest to the intervention site. This multiactivity on working time is conditioned by strong moments depending on the working context: understaffing, accumulation of weekend working, when the activity is most dense (the first Saturday night of each month), and so on. During “quiet” times, informal discussions take place between ARMs, discussions on files or monitoring of regulation files (these are times when ARMs take advantage of quiet time to consult a file they have taken charge and thus know the progress and outcome of the takeover). Discussions can also focus on anything else: their personal lives, weekend activities, etc. These conversations are naturally interrupted in the case of an immediately answered call. 8.3.2. At the collective level As we have seen, the fragmentation of activities influences and is influenced by the technical device for managing the patient file (on the computer) correlated to the handling of calls (telephone use). However, it is not only the technical device that is at the center of interactions. It participates in “organizational work” aimed at “building an organization that ‘works’, and is socially and subjectively acceptable” [DUJ 08, p. 109]. The

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comments collected during the interviews made an adjustment to the rules and procedures that depend on the personality and work of the regulating doctor. Thus “autonomous rules” [DE 03] are created according to the doctors acting in the control room. As we have seen, the work environment is saturated with “interactive artifacts whose uses contribute significantly to the proliferation of sources of solicitation and dispersion, and thus to the intensification and fragmentation of work” [LIC 08, p. 175]. Beyond the technique, verbal interludes are an integral part of this multiactivity. They are of different types: call reports to regulating doctors, information sharing with other ARMs orally, questioning of the referring ARM during the call, and informal discussion in moments of low activity. The dispersion of activities is therefore experienced collectively in a sense of calm that surprises the immersion researcher at first sight. This dispersion is also organized by the department through the layout of the room. The choice of open space is a first significant element of how the organization manages collective work. Here, if the offices are separated by low walls that allow the ARM to focus on their workspace, the open space also guarantees the availability of the ARMs toward each other but also toward their referring colleague and the regulating doctor: “this continuous coordination makes it necessary for everyone to be available for the demands of others” [DAT 13, p. 6]; it contributes above all to strengthening the collective and affirming ARM postures: the most experienced person is recognized, the ARMs know that they can address him, the referring ARM is identified because he circulates in the workspace and does not remain behind his desk, situations that are difficult to manage are immediately identified by colleagues (recurring calls from the same person for similar problems on the same day of the week, recurring calls from the same person to several ARMs, for example). Indeed, “such an environment will mobilize the peripheral attention of employees and it is often the organizational project that is behind such a spatial configuration” [DAT 13, p. 7]. ARMs support each other because they face the same difficulties; this situation of dispersion being common to all their colleagues, ARMs develop empathy and professional values such as mutual aid and support that form the basis of the relational skills specific to the function. For example, the majority of ARMs surveyed preferred not to take a break in order not to overload their fellow colleagues:

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I often eat (…) at my workstation because (…) my colleagues are in hot water and are constantly picking things up (ARM, female, two and a half years of experience). Finally, we can see that this open space is configured as an infocommunication space: it is informational because it contains many sources of information relating to the activity: illuminated activity monitoring tables, television with continuous information, posters concerning associated services, regional maps, etc. It is communicative because it induces spatial reports (reaffirmed by the layout of the room: allocation of regulation resources and doctors, ARM and CRRAL stations) and interaction methods in the performance of the role. Space acts here as a factor of articulation of activities: the ARMs in charge of the distribution of resources have a high posture, the same for regulating doctors, which guarantees them better visibility to capture the attention of ARMs. But it is above all the referring ARM who is responsible for the articulation of information and the relationship between ARMs and the regulating doctor. Thus, the sharing of an informational context is done at a lower cost and makes it possible to limit the procedures for disseminating information by a simple announcement to anyone who will listen, for example; moreover, this type of ecology reduces or even saves the “entry and exit costs” of interaction, no need for polite formulas; finally, it allows a better knowledge of other people’s activity, it also makes it possible to minimize the costs of interruption by placing the interaction at the right time. [DAT 13, p. 7] If this provision can make the performance of individual tasks more complex, the “obstinate presence” [DAT 07] of colleagues, their interactions, their actions and the adaptation to this set of tasks are therefore essential to the ARM’s work. 8.3.3. Between personal involvement and collective activities: The development of the proper role in the handling of the regulation file The ARM’s main role is to collect the information given by callers and forward it to the regulating doctor. This information is “produced through a

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telephone relationship with a caller in which his or her speech is transformed into administrative categories that it is up to operators to evaluate and make visible as an emergency. (…) The information produced in emergency call centers is the result of data collection, sorting, translation and prioritization that, once assembled, constitute this” [HEN 12, p. 91]. In addition to this strictly administrative role, many skills enable the ARM to carry out their roles and meet the expectations set out in the training courses offered prior to taking up the position. Thus, before entering training, teachers state a certain number of skills and competencies associated with the ARM profession5: “Skills: to express themselves clearly in all circumstances, to master communication tools, to master the computer. Knowing how to be polite, have respect for others, know stress management, be available, have a good analysis speed.” This knowledge can be assimilated to “communication skills” that are both not very visible and not very objective and therefore not recognized. They generally appear to be reduced to information transmission capacities or linked to relational qualities specific to the personality of individuals, leaving a blur between the recognition of the activity and that of the individual in charge of carrying it out” [LEP 13]. Beyond the “know-how” and “interpersonal skills” stated, our observations enabled us to identify a certain number of “action skills” [BAR 04], which are as many skills, “in the sense of operational skills, not identifiable through qualification or classification levels” [OST 10, p. 63] allowing the proper management of the regulation file. As Couthon, Martineau and Salembier [COU 14] noted, “the reference texts ([…] internal charter, job descriptions, procedures, etc.) explicitly do not cover or only cover to a very limited extent the articulation work necessary and essential for the coordination of activities. The knowledge and skills that the actors must apply to manage cooperation on the platform are thus little known or ignored.” Thus, multiactivity, which is fully part of an ARM’s “proper role” [MAT 16], is not effectively included in the texts defining the profession but is effective in professional practices. Above all, it ensures the proper management of the medical regulation file and the efficient exchange of information in the control room area. The development of this specific role is necessary for the proper functioning of the service, it results mainly from the adaptation of the professional to their working environment, and the autonomy they acquire according to their previous professional experience [DE 12, p. 5].                                         5 These elements are transmitted by the referring professors when they present the profession and the training to potential candidates.

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8.4. Conclusion Questioning ARM professionalism with regard to the practices associated with the management of the regulation file raises a tension between the stated functions of the ARM, which are more a matter of an administrative display of the role (completing an online file and transcribing the caller’s comments before transmission to the regulating doctor) and the actual roles in context (managing multiactivity, the stress inherent to the role, etc.). The medical regulation file thus appears to be the pivotal point of the multiactivity inherent in the ARM’s job. The management of this regulation file is the physical trace of the dispersion of professional activities in a complex environment subject to relational and hierarchical pressures. The work of ARMs “often becomes interface management or hazard management work. Consequently, it also imposes on workers a ‘meta-work’ of managing their availability and commitment: to develop priorities despite everything, to synchronize their activities, create continuity between successive episodes, and past and present activities” [BID 11, p. 12]. These roles require differentiated skills updating a “proper role” of the ARM, the efficiency of this specific role is reinforced by an increased knowledge of the medical environment in which they operate. This multiactivity, and more broadly the specific role of the ARMs that we have identified, contribute to the professionalization and affirmation of professionalism by the ARMs who are now awaiting statutory recognition and appropriate mandatory training. Important thoughts to make the work of ARMs compliant and enhance their value is carried out by the UNARM (the French national union of ARMs), and is supported by emergency services and the State. Thus, an information report prepared on behalf of the Social Affairs Committee registered with the Senate Presidency on July 26, 2017, by Laurence Cohen, Catherine Génisson, and René-Paul Savary, indicates several proposals linked to the essential professionalization of medical regulating assistance. One of these proposals (Proposal No. 20) provides for the introduction of “compulsory and standardized initial training of at least two years, including periods of training and culminating in a diploma to be a medical regulating assistant”6. Since then, the mobilization has taken on a new dimension. Indeed, the demands are stronger today as tragic events have highlighted the                                         6 Report available at: https://www.senat.fr/notice-rapport/2016/r16-685-notice.html, (accessed on February 1, 2019). Excerpt p. 56.

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dysfunctions of some SAMU services and the insufficient training of these professionals7 with regard to the requirements of the profession and the risks incurred by ARMs. At the beginning of 2019, a first meeting of the working group was held to create the diploma for initial and continuous training at the Direction générale de l’offre de soins (DGOS). The reflection carried out on the multiactivity of the ARM is indeed a way to explore in order to create adequate training content which reflects the reality of the activity. This gateway also allows us to take a closer look at the organization and collective work that often shape the practice of the profession in context. 8.5. References [BAR 04] BARBIER J.-M., GALATANU O. (eds), Les savoirs d’action: une mise en mot des compétences?, L’Harmattan, Paris, 2004. [BID 11] BIDET A., L’engagement dans le travail. Qu’est-ce que le vrai boulot?, Presses universitaires de France, Paris, available at: https://www.cairn.info/ l-engagement-dans-le-travail--9782130584681.htm, 2011. [BID 17] BIDET A., DATCHARY C., GAGLIO G. (eds), Quand travailler, c’est s’organiser. La multi-activité à l’ère du numérique, Presses des Mines, Paris, 2017. [BOU 08] BOUTET J., La vie verbale au travail, Octarès, Toulouse, 2008. [COU 14] COUTHON C., MARTINEAU R., SALEMBIER P., “De la qualité de la coopération à l’identification d’indicateurs de pilotage”, 25èmes Journées francophones d’Ingénierie des Connaissances, Clermont-Ferrand, 2014. [DAT 07] DATCHARY C., LICOPPE C., “La multi-activité et ses appuis : l’exemple de la ‘présence obstinée’ des messages dans l’environnement de travail”, Activités, 4–1, available at: http://journals.openedition.org/activites/1370, 2007. [DAT 13] DATCHARY C., “Les trois échelles d’analyse de la multi-activité au travail”, available at: https://hal.archives-ouvertes.fr/halshs-00919077/document, 2013. [DE 03] DE TERSSAC G (ed.), La théorie de la régulation sociale de Jean Daniel Reynaud. Débats et prolongements, La Découverte, Paris, 2003. [DE 12] DE TERSSAC G., “Autonomie et travail”, in BEVORT A. et al.(eds), Dictionnaire du travail, PUF, Paris, pp. 47–53, 2012.

                                        7 See article from Le Monde, “Affaire Naomi Musenga : les zones d’ombre de l’hopital de Strasbourg”, May 23, 2018, available at: https://www.lemonde.fr/societe/article/2018/05/10/ affaire-naomi-musenga-les-zones-d-ombre-de-l-hopital-de-strasbourg_5297221_3224.html (accessed February 1, 2019).

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[DEM 08] DEMAILLY L., Politiques de la relation. Approche sociologique des métiers et activités professionnelles relationnelles, Presses universitaires du Septentrion, Villeneuve-d’Ascq, 2008. [DUC 04] DUCHENE A., “Construction institutionnelle des discours : idéologies et pratiques dans une organisation supranationale”, Travaux neuchâtelois de linguistique, Revue Tranel (Travaux neuchâtelois de linguistique), Neuchâtel, vol. 40, pp. 93–115, 2004. [DUJ 08] DUJARIER M.-A., “‘Prendre sur soi’: l’individualisation du travail d’organisation”, in DE TERSSAC G. (ed.), La précarité, une relation entre travail, organisation et santé, Octares, Toulouse, pp. 107–118, 2008. [GRO 99] GROSJEAN M., LACOSTE M., Communication et intelligence collective. Le travail à l’hôpital, PUF, Paris, 1999. [GRO 10] GROSJEAN S., ROBICHAUD D., “Décider en temps réel : une activité située et distribuée mais aussi disloquée”, in Langage et Société, no. 134, pp. 31–54, 2010. [HÉN 11] HÉNAULT-TESSIER M., “Permanenciers assistants de régulation médicale au travail : quelles pratiques de communication sur une plateforme multimédia?”, Recherches sur la société du numérique et ses usages, L’Harmattan, Dinan, pp. 111–132, 2011. [HÉN 12] HÉNAULT-TESSIER M., DALLE-NAZEBI S., “Traiter les appels d’urgence. Fabriquer une information pour l’action”, Revue d’anthropologie des connaissances, vol. 6, no. 1, pp. 89–114, 2012. [JEA 99] JEANNERET Y., SOUCHIER E., “Pour une poétique de ‘l’écrit d’écran’”, Xoana, vol. 6, pp. 97–107, 1999. [LEP 13] LEPINE V., BERTRAND P., “Les compétences communicationnelles, l’impensé de la réingénierie de la formation des cadres de santé”, 81ème Congrès de l’ACFAS, Entre réflexif et prescriptif : analyse des dispositifs d’apprentissage et de formation des communicateurs, Montreal, Canada, 2013. [LIC 08] LICOPPE C., “Logiques d’innovation, multiactivité et zapping au travail”, Hermès, La Revue, no. 50, pp. 171–178, available at: https://www.cairn.info/revuehermes-la-revue-2008-1-page-171.htm, 2008. [MAT 16] MATUSZAK C., LAMY A., KERVELLA A. et al., “Impact de l’organisation sur la définition d’une profession au sein du SAMU : le cas des assistants de régulation médicale”, Revue française des sciences de l’information et de la communication, no. 9, available at: http://rfsic.revues.org/2235, 2016. [MAY 12] MAYÈRE A., BAZET I., ROUX A., “‘Zéro papier’ et ‘pense-bêtes’ à l’aune de l’informatisation du dossier de soins”, Revue d’anthropologie des connaissances, vol. 6, no. 1, pp. 115–139, 2012. [MOR 14] MOREL S., L’urgence à plusieurs “vitesses” : fracture territoriale et inégalité sociale dans l’accès aux soins d’urgence, Sociology, Université de Nantes, Nantes, 2014.

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[OST 10] OSTY F., Le désir de métier. Engagement, identité et reconnaissance au travail, PUF, Paris, 2010. [SIC 09] SICOT F., “Urgences pédopsychiatriques : resituer les crises dans le contexte organisationnel de leur survenue”, Empan, vol. 75, no. 3, pp. 53–60, 2009. [TER 03] TERSSAC DE G. (ed.), La théorie de la régulation sociale de Jean Daniel Reynaud. Débats et prolongements, La Découverte, Paris, 2003. [THO 10] THOMAS J., “Les lieux de communication dans l’urgence psychiatrique”, Communication et santé : enjeux contemporains, Presses universitaires du Septentrion, Villeneuve-d’Ascq, pp. 195–204, 2010.

 

9 The Moral Economy of the Health “Territories.” Technocratization from the Top-Down of Biopolitics, Politicization from the Bottom-Up of Life Policies

9.1. Introduction The fact that the “territorialization” of health policies has become the mantra of the reformers of the “health system” can be surprising to the health historian or sociologist. There is indeed a paradox here. What has been outrageous about the health reform reforming movement since the 1970s is that health is an expensive organizational chaos worked on by professional, social, and political forces, both localist and centrifugal. Is not the French hospital historically a communal establishment chaired by the mayor and whose development would be self-centered? Hasn’t the so-called “liberal” French-style medicine established the principle of freedom as one of the pillars of the 1927 Charter of Liberal Medicine? Didn’t the municipalities, very unequally, take advantage of the public health prerogatives conferred on them by the 1902 law? Didn’t the primary health insurance funds, managed by the “social partners,” benefit from a strong autonomy from the upper echelons, just like the local state? We would thus easily multiply the examples of an erratic and chaotic construction of the French health care offer, as, precisely, it had a local focus. And the same people have consistently denounced, since the 1980s, a chronic “sub-administration” of health in France, responsible for having given free rein to local political,                                         Chapter written by Frédéric PIERRU.

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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professional and social interests. In an issue of the French journal concerning public administration published in 1985, senior civil servant Marianne Berthod deplored: “Let us be clear, the administrative instrument is far from optimal today, and recent efforts are not commensurate with the questions raised. Often acting in urgency or ignorance, it is difficult for central and peripheral bodies to identify the right issues, those to which improved knowledge or intervention and in-depth consultation would lead to more effective responses. The loop may thus close definitively: health objectives cannot be defined” [BER 85]. Fragmentation, division, heterogeneity, compartmentalization, confusion of roles and competencies: all obstacles to the implementation of the health system. Nowadays, the expression “health system” has become commonplace, as has the observation of its “crisis”1. This has not always been the case. In terms of the 1970s, we will come back to this expression, which was the monopoly of a handful of experts in economics, management, and law. To be honest, the “health system” is congenitally in crisis, if we may say so, because the medical chaos pointed to by senior officials and health economists was not a “coherent” and “regulated” whole; in short, it was not a system. Certainly, the actors in the field have specific interests and logic. But observed overwhelmingly by “state minds” [BOU 94], the aggregation of these heterogeneous, even competing, interests and logic cannot lead to a health policy and even less to a “health system.” This chapter proposes to return to the paradox of a political rhetoric that constantly invokes “"territorialization” to legitimize reforms of the “health system” while, at the same time, empirically observable sociopolitical dynamics suggest rather an authoritarian recentralization of health policies, in the context of the strengthening of the debt order and, consequently, of the budgetary order. First, we show that the “territory” has historically been thought of by “state minds” as opposed to “local,” the latter representing a periphery, a source of inconsistencies and expenditure inflation. Second, the chapter shows that these “health territories,” regional representatives of the central health state, are threatened in their existence because of the radical nature of budgetary rationality and its utopia of “remote government” which                                         1 From a scientific point of view, the use of the word “crisis”, which oscillates between metaphor and concept, should be avoided [REV 12]. Historically, the medical world has been in a permanent “crisis” since the 18th Century. What matters are the successive “problematizations”, in the sense that M. Foucault and R. Castel give to this term, of this state of permanent “crisis”, if we are allowed this oxymoron.

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must however concede some elements of “territorial governance” in the name of a cosmetic “health democracy” and deal with some of the ruins of tamed Jacobinism. Third and finally, based on Didier Fassin’s recent reflections, we insist on the fact that this new technocratic frontier is condemned to come up against the bio-legitimacy of life policies, the latter promoting the bottom-up re-politicization of the orientations that the technostructure had encapsulated in black boxes, whether they take the form of agencies – organizational plans – or instruments, performance indicators, labels or even invitations to tender. 9.2. The system and the territory against the local It was from the late 1970s, in the State laboratories, and more specifically those of the Commissariat général du plan, that senior officials developed new categories, new arguments, and new instruments to say and act on what must become, once it is properly “regulated” and organized, a “health system” [BEN 05], [PIE 07]. The fact this work was carried out at the initiative and within the framework of the State must be stressed. Pierre Bourdieu, following in the footsteps of Émile Durkheim, pointed out that the State is the foundation of the logical integration and moral integration of the social world, and regretted that more emphasis was placed on the latter than on the former. However, logical integration leads crucially to a pre-reflective agreement by social agents on the categories of thinking, perception, and construction of reality. In this case, it is indeed a question of producing new categories of thinking and perception of the medical world, of constructing health reality and its cognitive and institutional boundaries [BOU 12]. This logical integration requires the wider circulation of collective representations which, in turn, become institutionalized in the form of a language shared by ever wider concentric circles (broadly speaking, from laboratories to the most politicized citizens, including a whole range of cultural intermediaries, such as experts and journalists), gradually creating a public health space [MAR 10]. This language, which allows the coordination of social actors, therefore acts as “logical training” because it functions as an obligatory point of passage – which is also hidden [GAX 78] – to be socially and technically authorized to participate in the debate on the future of health policies2. It is                                         2 It is necessary to have participated in some debates claiming “health democracy” to which the “ordinary citizens” were invited in order to fully feel the reality of this unofficial boundary which, once transgressed, provokes the bodily expressions of exasperation – hands on the back of the head, eyes fixed to the ceiling – of political and administrative “leaders”

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in these “neutral” places at the interface between the social sciences and the State that this language is forged, whether lexical or quantified, and which now, without our even being aware of it, frames our relationship with health as it should be a “system” [PIE 07]. If we follow the reasoning of Fauconnet and Mauss [FAU 69, p. 150], it was in the early 1980s that the institutionalization of the “health system” and its lexicon, of which “territory” is a component, began. Marianne Berthod recently joined the Commissariat général au plan as part of the renewal of frameworks after the arrival of the left in power in 1981, and set up a working group dedicated to the then-unprecedented theme of “regulating the health system” [BEN 05], [PIE 07]. One of the major conceptual innovations of this working group was to think in terms of “scenarios,” with a view to an overall reform of the sector, from financing to prevention, including city medicine and hospitals. We must break with urgency and action on a case-by-case basis in order to propose ways of structural reform. In short, to tackle (finally) the roots of the French health problem. The “territory” is not what is “local,” i.e., a place with a social and historical depth, characterized by an anthropological collection [LEB 13], political balances, in short, a land, with borders that are by definition sacred. This “local” is now identified with disorder, if not chaos, and heterogeneity, thus with expenditure inflation and inequalities. There goes the local, let us welcome the “territory,” the result of an investment in forms, within whose borders the “regulator” would acquire the human, material, expert and informational resources to “regulate” and decompartmentalize the supply of care, under the watchful eye of the taxpaying/voters. Although Marianne Berthod pleaded for a few more years in favor of the decentralization scenario, she did not win. It must be said that there was no shortage of opponents. There were, of course, those in favor of departmental decentralization. There were also senior officials, from both left and right, who were beginning to invest in a traditionally undervalued sector: “You don’t think about it? That’s completely insane,” recalled Marianne Berthod of the objections made to her. “We can’t manage this with something                                         confronted with the often detailed and pathetic account of the difficulties and sufferings encountered by patients telling their misfortunes in the first person. Accessing the public debate on “health system reform” implies an ability to rise in generality and to master a repertoire of terms and indicators that excludes, de facto, a majority of female citizens for whom “health” is one of the three main concerns.

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centralized at the national level, and then these are important issues and the regions are frankly zero, even though we can’t get to the national level and you want to multiply that by 22, it will go all the way, and then we’ll pay the doctor X francs in one place and Y francs in another, it will be unacceptable to citizens.” Local elected officials were also opposed to the decentralization scenario because “decentralizing health means decentralizing problems” [PIE 07]. These same local elected officials were much more comfortable with the “tame Jacobinism” model, which holds the State responsible for the financial imbalances of the “health system” while allowing them to obtain exemptions and passes thanks to good relations with prefects, or even with ministers, with weak decentralized State services being reduced to watching trains pass. Even if the decentralization scenario was unanimously rejected, the idea of making an uncontrolled supply of care coherent within a territorial framework to be defined began to gain ground. As Marianne Berthod left the CGP in 1988, some of the participants in the Plan’s pioneering reflections, such as manager Gérard de Pouvourville, contributed to the preparation of one of the most important reports on the reform of the health system after 1958: Santé 2010, which emerged from a commission on the Plan chaired in 1991 by Raymond Soubie, future social adviser to President Nicolas Sarkozy, when the reform was being drafted. This commission heard from Quebec experts who, at the same time, were members of the Royal Commission known as the Rochon Commission, named after the Quebec Minister of Health of the time, whose objective was also to fundamentally transform its “health system.” The 2010 Santé Report, known as the “Soubie Report,” was the repertoire from which all governments drew on the elements of the reforms that were implemented from the mid-1990s onward. In fact, health policies were put in place, like a puzzle, the configuration recommended by this report, despite the political changes. The region was recognized as the relevant territory for the “regulation” of the “health system.” All instruments were therefore marked with the “R” for regional. The 1996 Juppé ordinances started by setting up regional hospitalization agencies, in the face of the absolute refusal of health insurance to merge its services with those of the State and in the face of resistance from the state authorities. But the idea of the ARS gradually gained ground and became the subject of a transparent consensus. But it was an ambiguous consensus, as consensuses often were: the protagonists in the health policy arena did not give the same meaning to the “A,” “R,” and “S.” However, as we know, we only escape ambiguity to our detriment.

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9.3. A new technocratic boundary: Escaping politics With the economist Philippe Mossé, we identified, at the beginning of the 2000s, a tension between two public action frameworks in hospital restructuring processes, a situation that could be generalized to the entire health system [MOS 02]. One was technical and top-down, the other was political and bottom-up. The various instruments, which were ambiguous, were used differently depending on whether they were used by those who supported a particular reference system: contractualization, planning, PMSI, and accreditation. We then noted that there were no mediators capable of imposing a reference framework. The vagueness and ambiguity allowed a slow, low-noise, slow recomposition of the care offer. Hospital regulation remained “prudent and negotiated.” The situation has changed as a result of the tightening of the budgetary constraint since 2002, in line with the deterioration in the macroeconomic situation. Policymakers then had to obtain rapid, quantifiable and communicable results. The supporters of the technical/centralized repository then pushed their advantage even if they had to make some temporary concessions to the supporters of the political/deconcentrated (bottom-up) reference document. Two reasons, partly linked, turned the balance of power upside down: on the one hand, the macroeconomic context, and on the other hand, the enkystement of the New Public Management in the “central decision-making environment” (LOLF 2001, modernization audits in 2006, the Révision Générale des Politiques Publiques (RGPP) in 2007, the MAP in 2012) [BEZ 09] to face the “debt crisis,” then constituted as a public problem [LEM 16] on the other hand. It should be noted that the more ONDAM’s rate of change tightened, in other words, the tighter the control of healthcare expenditure, the more “bounded” it was, as budgetary regulation mechanisms had been put in place. It should also be noted that the period 2012–2017 was particularly austere for medical insurance, the main contributor to the deficit of the general social security system. The 2008 financial crisis turned into an economic crisis from 2010 onward. After allowing the “automatic stabilizers” to operate in the urgency of the financial crisis, the public authorities decided to tighten the budgetary “screw” from 2010, under pressure from the European authorities. In a period of severe economic recession, restoring the accounts of the general regime was no small feat: revenues were mainly based on labor incomes – hit hard by unemployment and stagnant wages – while expenditure changes according to factors independent of the economic situation. For the health

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sector, this mainly concerned technological “progress,” demographic factors (growth, and to a lesser degree, aging of the population), the epidemiological situation, etc. It is in this particularly deteriorated macroeconomic context that “public debt” was gradually being constructed into a public problem, a politicalmedia construction whose mechanisms Benjamin Lemoine dismantled in a remarkable book [LEM 16]. Social security, in particular, the pension branch, was at the heart of the work of the group of experts dominated by Bercy’s agents (Pébereau himself being a finance inspector). Indeed, in order to arrive at a striking and edifying figure, some argued for the inclusion of future pension commitments in the scope of public debt. The priority given to the “consolidation” of public finances – including social finances – brought the “State Reform” into industrial mode. In the wake of the LOLF which came into force in 2002, modernization audits were launched by the Villepin government in 2002, then, in 2007, after Nicolas Sarkozy’s election, the RGPP was supposed to symbolize the political voluntarism of the newly elected President [BEZ 09]. We will not develop in detail here the processes that have led to a significant change in the “style” of French public policies. It should only be mentioned that the “strategic state” model, in the making since the second half of the 1990s, is being fully deployed in this inseparable macroeconomic and political context. This model, therefore, separates the moment of decision-making – monopoly of the political, bureaucratic and economic elites, whose boundaries are increasingly porous – from the moment of execution, according to a centralized and top-down scheme. Renaud Epstein strongly emphasized that the centralization of decisionmaking processes is intended to bypass social and political forces: “the model that is being developed is therefore characterized by a movement of withdrawal on the part of the State, which extracts itself from the territories to better govern them at a distance. This withdrawal aims to reduce the influence of local elected officials (relayed within the State administrative apparatus) on national political choices, and therefore corresponds to a search for the restoration of the central political authority, both on the administrations and on local elected officials. But this authority no longer passes through the hierarchy, or even through negotiation. More surely, it relies on new government technologies, organizing remotely the strategies freely developed by local actors” [EPS 05, p. 12]. This was the end of cross-regulation practices concerning “tame Jacobinism,” of the modernizing state of the post-war boom years [GRE 80], i.e., arrangements between local notables and prefects to shape

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nationally defined public policy orientations. Also denied are the politicalknowledge prophecies of the advent of “territorial governance,” shaped by procedural and constitutive policies, formulated in the 1990s and of which urban policy would have been the advanced leading figure [DUR 96]. The host state survived. Moreover, those who heralded this great change in public policy were forced to admit that we were rather witnessing the recentralization of States, accompanied by a second bureaucratic revolution spreading the “formalities” that came from the business world. The complexity and multidimensionality of concrete local situations disappeared in favor of an acritically used quantification with which it had a very loose relationship: “This governance [by numbers] is organized in such a way as to produce internally the quantified evidence of its effectiveness and then to be able to display it publicly. The price to pay is the increasing divorce between the apparent increase in performance and the deterioration of actual life and work situations. A divorce characteristic of a democracy” [SAL 14, p. 380]. Obtaining at all costs short-term quantified results, largely self-realizing, from which political actors can communicate makes little use of the ideal of the ethics of Habermasian discussion. Scientists definitely make very bad prophets, as Bourdieu and Passeron had already noted a long time ago [BOU 63]. The health sector, the main budget item for social security after pensions, was necessarily in the spotlight. The context of the 2000s accelerated the managerial conversion of the health state, like that of health insurance, which had been in the making since the late 1980s [GAY 18]. It was no longer time to procrastinate and waste time and energy in negotiating and seeking compromises with the health system’s historical centrifugal forces: unions, professionals, local elected officials, associations, etc. The political and bottom-up frame of reference was increasingly giving way to the technical, top-down and authoritarian frame of reference, focused on achieving quantified objectives (budgetary, of course, but also in terms of bed availabilities, restructuring of the medico-social sector, etc.) in the short term. The affirmation of the health state took on neo-managerial dimensions, even if it still had to deal with the fragile sectoral institutions inherited from the conflicting and erratic history of the health system. The result was a hybrid sectoral government in which the centralized managerial state had to deal with the ruins of the planning legacy of years of expansion of the health system and timid attempts to introduce “territorial governance” forums initiated in the name of a “territorialization” that remained very variable according to the regions and claimed to be a “health democracy” as vague as

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it was cosmetic3. By barely forcing the line, one could say that the slogans of “territorialization” and “health democracy,” a sectoral declination of participatory democracy, aimed to reduce the impression of authoritarian centralization, very real in fact [BLA 09]. It should be mentioned in passing that the disruption observed in the early 2000s was not specifically French. Dominique Polton notes that while the 1990s had been conducive in many developed countries to a decentralization dynamic in the form of political devolution to sub-national communities, the 2000s saw the opposite dynamic of state recentralization and delegation of management to competing care producers at the expense of local and regional authorities and decentralized administrations [POL 04]. Thus, for example, the regional authorities that had inspired the authors of the Santé 2010 Report are being removed. This is undoubtedly the time for the central state to “remotely manage” the periphery by means of New Public Management technologies [BEZ 09], [EPS 15]. 9.4. Centralization, verticalization, and integration of sectoral government In the case of France, to capture the respective influences of these three conceptions of the “good governance” of health, it is necessary to identify the structuring and significant instruments that form the framework of sectoral public policies. Let us look at these public policies in more detail. First, from the perspective of a sectoral government, there is no doubt about verticalization and centralization [PIE 07], [PIE 15], [PIE 16]. From this point of view, the network of health insurance funds is the one that has pushed managerial conversion the furthest: the national funds, grouped together since 2004 within a Union nationale des caisses d’Assurancemaladie, UNCAM (national union of health insurance funds) headed by a senior plenipotentiary official appointed by the Council of Ministers, have set up an industrial-type management system that reduces the autonomy of local funds to their most limited portion. The national level defines priorities and objectives, develops performance indicators (mainly financial) and a chain of command responsible for implementing the orientations thus decided upon. Since the 2004 reform of the health insurance system, the social partners have been relegated to supervisory boards without being able to face bureaucrats trained in managerial technologies within the École                                         3 This hybridization can be observed in other sectors of public action [AUS 12].

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nationale de la Sécurité sociale. The neo-managerial government of the primary fund network – the regional level having been bypassed by national decision-makers because it has been merged into regional health agencies – is promoting a new subjectification of the “user”: the social insured, who once was a stakeholder as an elector of “social democracy,” becomes a consumer: [The user] is no longer a citizen registered in the life of the city, endowed with a political conscience, concerned with maintaining a State that guarantees equality and ready to participate in the life of the community. From now on, he becomes a consumer mainly concerned with performance for him as an individual of the service or common good concerned. [SAL 14, p. 378] Sociologist Pascal Martin documented the modalities of this managerial conversion of the institution and its harmful consequences for the most precarious users: it induces a “new government of the poor,” those who are beneficiaries of assistance mechanisms such as the CMU-C and State Medical Aid, based on suspicion of fraud and the reinforcement of controls [MAR 16]. In addition, dematerialization and digitization lead to new inequalities according to users’ IT skills, euphemized as a “digital divide.” As for the welfare staff, the transformation of work is similar to a new-look Taylorism. The bureaucratization of procedures, which constitutes a decline in the interaction of the information elements which should not be idealized either, as many sociological studies have shown), combined with the institutional focus on budgetary savings, also explains to a large extent the phenomenon of non-use of fees, which are massive for certain services such as aid for the purchase of complementary health care (ACS) [DUB 10], [ODE 12], [WEL 18]. In any case, we are now very far from Pierre Laroque and Ambroise Croizat’s ideal of a social, local, and living democracy in which the insured are stakeholders in the decisions of autonomous primary health funds, open to the “community” and its lato sensu health problems. In general, neo-management makes losers and winners among subjective users into “consumers.” The losers are the most economically, socially, culturally and politically vulnerable (they vote little and generally have few political activities). On the other hand, for the well-integrated, educated middle and upper classes, the dematerialization and digitization of the “Améli” portal fully meets their expectations of “reactivity” and “modernity.” “Proximity,” embodied by the interaction of the information desk [DUB 10], [WEL 18], does not have the same value and relevance according to the social origin of

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the holders of social rights, conditional for some, full and complete for others. On the state side, the process of centralization and verticalization has been more problematic. During the “Hospital, patients, health, territories” reform, tightly linked to the RGPP, a coalition at the head of State planned to entrust all regulation to the insurer, i.e., social security, whose neomanagerial virtuosity was praised to better decry decentralized services of the State supposedly possessing obsolete skills and instruments of action, and, worst of all, too much compromised with local elected officials. This conflict between a Social Security system that has fully converted to New Public Management, and which has control over city medicine, and a hospital state – whose agents have not yet fully carried out this conversion – is not just a matter of classic institutional and power struggles. More fundamentally, it concerns the “reference frame” of health policies. Indeed, we have seen that pioneering reflections on the sub-administration of health and the means to remedy it have taken place within the Plan. While the Plan was undermined and then abolished in the 1980s, the expansion and modernization of hospital stock was largely carried out according to the planning logic which, of course, underwent major changes between the early 1960s and the 1990s. From being quantitative, it has become more qualitative. From being sectoral, it has become more integrated. The notion of “health needs” was the epistemic basis and the health map, then the different regional schemes, the instruments. It was carried by administrative bodies trained mainly at the École nationale de la santé publique and which constituted a kind of sectoral planning community: public health doctors and pharmacists, sanitary engineering engineers, health and social affairs inspectors. During the 2000s, its foundations and actors were abused [PIE 12]. The notion of “health needs,” the cornerstone of any planning enterprise, became the subject of disqualification attempts in the name of the impossibility of rigorously objectifying them: these “needs” were therefore only the false side of the economic interests of health professionals and institutions [DEP 09]. Above all, politicians, senior officials and health economists highlighted the inability of planning to restructure the hospital stock, as it remains trapped in the games of “cross-regulation” between local notables, prefects and ministerial cabinets. In fact, hospital planning establishes political regulation of the hospital, for better or for worse. For the best: it allows a form of democratic responsiveness to the demands of current or potential “users.” For the worst: putting local interests first, it struggles to develop a global perspective on the supply of care and, above all, increases inequalities between institutions according to the political

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capital of elected officials. In short, planning was the relevant instrument for ensuring the development of the hospital stock, no longer the relevant instrument when it came to reducing hospital capacity and promoting what is now known as the “ambulatory shift.” From the neo-managerial point of view, planning is synonymous with slowness, preservation of income, inflationary drift in spending, impossibility of questioning French hospitalcentrism, and demagogy [PIE 12]. Planning, whatever its starting point, is a criticism of politics, the politicization of health issues, and hence of “local” (irrational and expensive) versus “global” (rational and efficient). Consequently, the “local” is not the solution, it is the problem. Or, rather, it may be a solution when, through the deployment of incentive and coercive instruments, local actors put the “autonomy” granted to them at the service of nationally agreed goals. Hence the oxymoron: “Being autonomous to achieve our objectives!” The interlocking of contracts of objectives and means is never more than the new face of a “pure” Jacobin State, free of peripheral political and administrative arrangements, which is not unlike a form of “repatrimonialization” of the State. 9.5. 2009: The final fight? Neo-management is the operational application of the centralized technical reference framework; planning corresponds to the “bottom-up” political conception of health policies, even if it may be more or less open to political rationality and inclined to negotiation and compromise. The elaboration of the 2009 “Hospital, patient, health, territories” reform was an opportunity to confront these two conceptions of sectoral “good governance,” via two coalitions that transcended the State boundaries. Logics of institutional squares played a role, as did the rivalries of people. But, more fundamentally, these struggles focused on the place and role of politics, lato sensu, in the regulation of the health system: the place of actors qualified as politicians, of course, but also and above all as collective deliberation in decision-making processes. The reform was, in the end, a half-hearted victory for the supporters of the political/deconcentrated approach [PIE 16]. It was also an institutional armistice within the framework of the domination of budgetary rationality. The regional merger of the services of the decentralized State and the regional health insurance services into public administrative institutions incorrectly described as agencies (regional health) left the organization “in organ pipes” at the national level unchanged [PIE 15]. The historical rivalry between the national level of health insurance and the Ministry of Health was not settled

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and a compromise solution was found with the Prefectural Government on all aspects of health monitoring and safety. The designers of the territorial administration component of the reform opted for an ad hoc solution to better coordinate the 14 national principals of the new regional agencies, namely, a national steering council chaired by the ministers of health and public finance, operating by consensus, and thus at the lowest common denominator. For a time, the State seemed to have pushed the insurer aside to become the sole regulator of a health puzzle that claimed, through decompartmentalization and interdisciplinarity, to become (finally) an integrated “health system.” However, what can be said about the “territorial” nature of regional health agencies and their sub-regional organization? Territorial, public health policies are not very well known, if at all, if we remain committed to a rigorous definition of the notion of “territorialization,” this keyword in terms of political rhetoric: “Thus, the territorialization of public health policy cannot be assimilated to a simple targeting in particular areas of preestablished prevention techniques. Territorializing public health actions or, even more so, a policy, means anchoring this policy in the very mechanisms of the territory’s production in order to influence it” [RIC 09, p. 35]. The “agency” form could have suggested a certain autonomy of these new institutions with regard to the national level. In reality, it has mainly been an ad hoc solution for merging agents from different legal regimes: while 80% of the latter, from the decentralized services of the State, are tenures of the civil service, the other 20% are health insurance agents and are covered by a collective agreement. The directors-general of the ARS, appointed and revocable senior contract officials in the Council of Ministers, report to the Minister of Health. In their daily operations, the ARS operates like decentralized State administrations: their action is strictly governed by budgetary instruments – starting with ONDAM and its sub-level – human resources management rules, regulatory tools (T2A, national agreement signed by the Director-General of UNCAM and the liberal professionals’ unions) and directives defined at national level. Policies remain highly centralized and defined in tandem, whether in urban medicine (the presquare of the health insurance system), hospitals (the core business of the ARS but closely overseen by the various components of the national level), medical and social services (the pre-square of the Caisse nationale de solidarité pour l’autonomie and, we will come back to this, departmental councils) or even prevention and public health, policies that have also undergone a process of centralization by the state since the 2004 reform. The consequence of this sectorized centralization, the ARS, created to break

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down the barriers between the city, the hospital, the medico-social, and prevention, is the creation of “common houses” where previous knowledge and know-how were surreptitiously reconstituted [GUR 15], [PIE 15]. Some observers plead with the youth of these new organizations to mitigate the relative failure of the reform and show, for example, the creation in 2012 of a Fonds d’intervention régionale (IRF), budgets in the hands of the ARS’ DGs, to show that the objective of “territorialization” in the form of an agency is being deployed. The FIR would be the prefiguration of an ORDAM that everyone would expect. These arguments were not convincing. The relative stagnation of the FIR, so much praised in political rhetoric, was far from attesting to an increase in the financial autonomy of regional health agencies – 3,300 million in 2017 for a total ONDAM of €190.7 billion; we will appreciate the degree of “regionalization” of health policies. In fact, the undivided domination of fiscal rationality, and therefore of the powerful political-technocratic coalition that supports it, is an antinomy of real deconcentration of sectoral government. In addition, institutional rivalries at the national level hinder the daily attempts of ARS agents to induce “decompartmentalization” and “interdisciplinarity.” Ethnographic observations made with Christine Rolland in three regions, as well as subsequent exchanges with members of the executive committees of other ARSs, confirm this conclusion: as in other comparable countries, the politicization of health issues and, above all, their “budgeting” has led to a reversal of the territorial ambitions expressed by the reformist rhetoric [PIE 15]. Through their Regional Health Programs, ARSs regionally implement public policy guidelines developed at the national level. 9.6. An evanescent territorial health state If further proof of this centralization-nationalization is required, it is sufficient to look for a moment at the situation of the Departmental Delegations (DD) (previously DDASS). It is not an exaggeration to talk about the State’s withdrawal from the local levels [PIE 15]. Initially, the official designers were given considerable freedom to organize their subregional level, but gradually the Ministry intervened to promote a so-called “integrated” DD model with the advantage of recentralizing and sharing as many functions as possible at the regional headquarters level. It is up to new territorial delegates to lead local “health democracy” (territorial conferences, territorial health projects) and to initiate or amplify local mobilization

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dynamics around health issues, with, ultimately, in the best of cases, the conclusion of “local health contracts” (CLSs). However, they must do so within a framework of centralized resource management at the regional headquarters level, pervasive interventionism on the part of the latter, few financial resources to attract and recruit local actors, who are therefore tempted to knock on the door of competing information desks (prefectural services, departmental councils, etc.), and, finally, with the feeling shared by all parties that the sub-regional administration is being downgraded. The ARS are colossus with clay feet and it is difficult to see how they would have the means to develop “tailor-made” policies to respond to the complexity and specificity of local health situations, in a more global context of worsening territorial inequalities not only in access to care but also in terms of social inequalities in health. Does this general picture, drawn broadly, validate Renaud Epstein’s neoFoucaldian theory that we are witnessing the recentralization of the State, which would remotely manage – in fact discipline – the actors in the health and medico-social sectors who are posed as “autonomous” using technologies such as the call for projects, labels or performance indicators? [EPS 05]. In general, the answer is yes. However, it is important to qualify. Indeed, the relative poverty of the health administration, even when merged, as well as the sharing of certain competences with other actors such as departmental councils for medico-social matters, can lead agencies to mobilize their meagre resources to initiate the beginnings of policies that are emblematic of the famous “territorial governance” so much praised by politicians in the 1990s. With few means of putting pressure on local authorities, the ARSs try to convince local authorities to pool their financial resources in order to promote an “interdisciplinary” local dynamic. Logically, it is not in their interest to cooperate, especially if the ARS is in a top-down position. On the other hand, if elected officials are already involved in local health policies or wish to do so, it is rather they who seek the ARS to try to have a “label” – the local health contract (CLS) – that legitimizes them. It is therefore the conditions under which interactions, debates, negotiations and compromises are organized that color local health contracts rather as instruments of topdown government or, conversely, as opportunities to bring out local policies adjusted to the expectations of elected representatives and local partners. The work of Nadine Haschar-Noé and her team or that of Patricia Loncle on the territorialization of public health policies, however, tends to point to the greater frequency of cooperation prevented than that of successful “territorial governance”: “territorial authorities do not claim this role here but rather independence in their decision-making. By requesting their assistance, the

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State wished to encourage the development of policies to support the national system. However, it is clearly local distance strategies that dominate here, as administrative regionalization cannot temper this empowerment of local executives. Their financial mobilization also represents additional resources for this public policy, which it would be inappropriate for the State to challenge even if it intends to remain the leader in this area” [HAS 15], [HON 18], [LON 09]. From the point of view of liberal professionals and hospitals, the situations are again variable. For city healthcare professionals who wish to embark on innovative forms of practice, i.e., collective and multiprofessional, whether in the form of a “multidisciplinary health center” or “health centers” to remedy “medical wastelands,” the new sectoral government is a real demonstration of innovation: not only does the persistence of fee-for-service threaten the economic viability of these new organizations, but also the response to calls for tenders from ARSs constitutes a time-consuming bureaucratic obstacle course, all the more damaging as the negative demographic trend in the demography of general practitioners and the reduction in their working time mean that the available medical time is decreasing. For hospitals, the increase in the cost of activitybased pricing (T2A) from 2004 onward to finance 100% of medical, surgical and obstetrical care has seriously affected their historical autonomy [JUV 16]. Indeed, the finances of many institutions, particularly the largest of them, the university hospitals, have plunged into the red, leading some to take on heavy debt, in addition to so-called toxic loans. The balance of power has therefore changed: faced with a now unified supervision, and no longer able to play on the fragmentation and rivalries of the decentralized State and health insurance services, the institutions are also subject to a “bankruptcy policy” in which “the implementation of accounting systems, legal standards and financing instruments, objectives concerning the financial performance and efficiency of these entities, links this battery of measures to their survival, and fixes responsibilities, in the event of failure, on the structure itself and its managers. As an exercise in remote government, fallibility makes organizations themselves internalize a fallible future by placing their “backs to the wall” [JUV 18]. In this context, the central government is in a position, via the ARS, to force restructuring operations that hospital players have long successfully resisted. Local elected officials have been expelled from the “new governance” of hospitals. In addition, the new Territorial Hospital Groups, created by the Touraine law of 2016, and intended to pool the so-called support functions while grading establishments

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according to the level of technicality of care, benefit both from the coercion and the weight of establishments involved in financial difficulties that place them at the mercy of central state aid. Hospital regulation is less and less political, in the sense of the “cross-regulation” identified by researchers at the Centre de sociologie des organisations (CSO), and more and more financial and remote. Of course, the budget ceiling varies according to establishment size: relentless with small and medium-sized establishments whose interlocutor is the ARS, it is more accommodating for large university hospitals, which have as their direct interlocutor the Direction générale de l’organisation des soins (DGOS), one of the two main central administrations of the Ministry of Health. The possibility of appealing directly to the political center for dispensations or adjustments remains open to them. One would be tempted to conclude that the “territorialization” of health policies would only be a shield to the affirmation of the central health state, flanked by a string of health agencies, equipped with the instruments and benefiting from the balance of power that allow it to govern the “health chain” from a distance. However, this is lively, as we say in music, which does not exclude the use of repertoires of action – territorial governance – and the persistence of features derived from the traditional administrative model, “tame Jacobinism.” The historical weakness of the health administration, reinforced by the policy of reducing posts and budgetary rigor of the last 15 years, the sharing of competences with health insurance (for city medicine) and departmental councils (for medico-social issues), are only partly offset by the merger, on the one hand, and by the deployment of the instruments of the New Public Management and, finally, by the determination of the Ministry to “manage” the ONDAM. The central health state and its regional apparatus have therefore been recognized as the regulators of the health system, but they still have to deal at the national and local levels with competing actors and interests. The voices that had been raised during the elaboration of the 2009 reform to promote a centralized and technical approach, away from politics, were not silenced even if they partially lost the game then. Ridding the sectoral government of its political dregs, perceived as a factor of costly demagogy and irrationality in the organization of the “system,” remains the dream of part of the technostructure, supported by some parliamentarians. Creating a technical “National Health Agency,” and remotely managing GHTs that would reorganize the entire health care offer would make it possible to get rid of intermediate administrative levels such as the ARS. After all, that is exactly what health insurance did by reorganizing its funding network in

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the 2000s. The national level takes on negotiations with liberal professional unions, defines priorities (mainly financial), develops performance indicators and contracts, on the basis of the latter, with local funds, which are no longer small, often zealous, executors of national policy. There is no need for a regional level that had republican planning perceived as obsolete. And moreover, the UNCAM would see itself becoming the heart of the future ANS. 9.7. Technocratic “boundaries” facing the anarchy of life However, is this technocratic utopia – or democratic dystopia – of a “technical” and centralized government, remotely managing the periphery through numbers, financial incentives and the logic of honors (labels) seriously conceivable in a field as socially sensitive as health? We do not think so. First, because the indeterminacy of the notion of “health” allows for all kinds of competition for its definition and operationalization. “Health” from a national or even regional level (where the abstract term “health value chain” is often used) is not the “health” experienced by individuals. The health considered in the overhanging loftiness of the State is a biopolitics, or, better said, by Didier Fassin, a demopolitics in so far as it takes as its object not singular lives but populations [FAS 18]. “Health” is an autonomous sector of public action, a division of reality through which the substance of the problems to be addressed or the nature of the populations concerned will be identified and “formatted,” but also “a vertical structuring of social roles with its rules of functioning, the elaboration of specific norms and values, the selection of elites and the delimitation of boundaries” [MUL 10, p. 593]. The sector is inseparably cognitive, institutional and normative. It is also a historical-political construction even if its institutionalization has made us forget the genesis of the state. Yet, the daily practice of remote government through abstractions tends to reinforce arbitrariness, cognitive and institutional, of any sector of public action. According to Frédéric Lordon [LOR 16, p. 83], The government of large numbers, the complexity of institutional scanning and the taking administrative work further (public and private) necessarily lead the oligarchy to have no contact with the governed (citizens and employees), except through the mediation of cognitive instruments, especially statistics. In other words, to have broken with the following

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affections by seeing in concreto the lives of the governed as they were told them. However, when we change scale, when we move from the macroscope to the microscope, when we are as close as possible to individuals, then we change our moral economy. Demopolitics is giving way to the politics of life and the tension, saturated with affects, between life captured as biological (zoé) and life as living biographically (bios) [FAS 05], [FAS 18]. With the refinement of the grain, in the photographic sense, the boundaries of the health “sector” become blurred, erased. The protests and indignation of health professionals, social workers, local elected officials, medical public health inspectors or health and social affairs inspectors, all of whom are struggling with life, exposed or social, biological or biographical, reflect that, for them, health does not have the same meaning as for political and technocratic elites. At their level, “health” is inseparable from “social,” “cultural,” “educational,” and “habitat,” all dimensions that are embedded in individual biographies whose quantity and quality of life are only the consequences. The meaning of the signifier “health” therefore varies according to the political space and its specific moral economy. Moral economies closely link, in a given space, values, norms and affects and define thresholds of what is feasible and tolerable. Bio-legitimacy has become the unavoidable repertoire of scandal in societies hit by the decline of great political narratives and in which there is a powerful dynamic of “sanitarization of social matters” [FAS 98]. However, this bio-legitimacy implies nolens volens a “bio-responsibility” of elected officials [BOU 08], whether they are national or local. Bio-responsibility from which they cannot escape, as the drama of life generates affects and, consequently, collective mobilizations [LOR 16]. It is a strange paradox that the advent of this bio-legitimacy, which makes the protection of exposed life the supreme good: thriving on the decline of politics, it takes the form of a humanitarian reason that can repoliticize, from below, the consequences on the relative value of lives, of the choices made by governments whose ideal is to become, after companies, “cyber-managerial”: “ordered by the new trinity of goals, means and results, in the name of ‘efficiency’, management and cybernetics merge in the search for a rational and efficient, depoliticized, technologized and automated government: a fully scientific power at last” [MUS 17, p. 691]. Whether it is a question of “medical wastelands,” the maintenance of small local hospital structures, suicides in the workplace (or non-working after the closure of a factory) or the local health consequences of the use of pesticides or other toxic products, life becomes the key to

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List of Authors

Jocelyne ARQUEMBOURG CEMS-EHESS Université Paris 3 Sorbonne Nouvelle France Mikaël CHAMBRU GRESEC Université Grenoble Alpes France Nathalie GRABAR Savoirs, Textes, Langage (STL) CNRS - Université de Lille France Brigitte JUANALS Centre Norbert Elias Ecole de journalisme et de communication d’Aix-Marseille France Eric KERGOSIEN GERiiCO Université de Lille France

Benoit LAFON GRESEC Université Grenoble Alpes France Aurélia LAMY GERiiCO Université de Lille France Céline MATUSZAK GERiiCO Université de Lille France Cécile MÉADEL CARISM Université Paris II PanthéonAssas France David MORQUIN Montpellier Research Management Université de Montpellier France

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Caroline OLLIVIER-YANIV CÉDITEC Université Paris-Est Créteil France

Frédéric PIERRU CERAPS Université de Lille France

Roxana OLOGEANU-TADDEI Montpellier Research Management Université de Montpellier France

Pierre VALETTE Centre Hospitalier d’Arras SAMU du Pas-de-Calais France

Isabelle PAILLIART GRESEC Université Grenoble Alpes France

Index

A, B antibiotic resistance, 1, 2, 4–7, 9, 10, 13–17, 24, 29, 46 arena, 5, 9, 15, 70–72, 79, 80, 88, 91, 94, 96, 97, 99, 100, 163 bacteria, 1–5, 7–10, 14, 17, 30 boundary object, 1, 10, 16, 17 C, E controversy, 71, 72, 77, 80, 88, 89, 92–97, 99, 100, 102 Electronic Medical Record (EMR), 125, 137, 138 environmental health, 49, 57, 62 H, O health democracy, 113, 166, 167 One Health, 10–13, 16, 17 P pollution, 23, 28, 29, 33, 35, 40, 41, 46, 73, 75, 76, 84 press, 5, 6, 8, 20, 21, 24, 38, 41, 44–46, 90, 98, 106, 180

professional practices, 11, 14, 142, 143, 153 public action, 15, 48, 93, 101, 164, 166, 167, 176, 179 consultation, 88 health, 10, 13, 17, 19, 21, 24, 26, 28, 29, 32, 39, 42, 43, 46, 47, 51, 54, 57, 72, 74, 87, 89, 93, 94, 102, 123, 169, 171, 177, 179, 180 problem, 1, 3, 15, 30, 35, 41, 46, 70–74, 76, 79, 80, 82, 83, 164, 165 space, 9, 19, 47, 64, 69, 71–74, 76–81, 83, 95, 100–102, 161 R, V, W risk, 4, 5, 8, 14, 17, 21, 30–33, 36–39, 41, 46, 61, 63, 69, 70, 71, 73, 74, 77, 92, 93, 103, 134, 160 vaccination, 87–100, 102 whistleblower, 14, 38, 69, 92, 95  

 

New Territories in Health, First Edition. Edited by Isabelle Pailliart. © ISTE Ltd 2020. Published by ISTE Ltd and John Wiley & Sons, Inc.

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