Personalized Specialty Care: Value-Based Healthcare Frontrunners from the Netherlands 303063745X, 9783030637453

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Personalized Specialty Care Value-Based Healthcare Frontrunners from the Netherlands Nico van Weert Jan Hazelzet Editors

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Personalized Specialty Care

Nico van Weert  •  Jan Hazelzet Editors

Personalized Specialty Care Value-Based Healthcare Frontrunners from the Netherlands

Editors Nico van Weert Society Personalized Health Care Nijmegen The Netherlands

Jan Hazelzet Center for Value Based Health Care Erasmus University Medical Center Rotterdam The Netherlands

ISBN 978-3-030-63745-3    ISBN 978-3-030-63746-0 (eBook) https://doi.org/10.1007/978-3-030-63746-0 © Dutch Federation of University Medical Centres 2021 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Foreword

Medical care is always evolving. Many physicians, nurses, and other healthcare professionals are constantly in search of opportunities for improvement. This is also the ideal of the profession: providing care and reflecting on what can be improved. This publication offers a selection of practices that excel in this area. Their improvement work has a well-chosen direction: ensuring that care increasingly meets patients’ needs, preferences, and values. The application of patient-reported outcomes is crucial for supporting continuous improvement. After all, this creates an idea of the outcomes from the patient’s perspective. It is worth noting that simply distributing these questionnaires has positive health effects. The personalization of care follows on its own: discussing what the patient finds important and focusing on what matters most to them. Sometimes this requires additional care and other times it calls for less. This publication shows how university medical centers, together with their partners, adapt how healthcare and its processes are provided in order to offer personalized care and increase the value for the patient. Solutions that work are specific to the situation: the clinical profile, the characteristics of the patient group, and circumstances in the hospital or region. That also explains the power of learning interdisciplinary care teams. Together with patients, they are able to precisely and specifically personalize the care based on the situation. The Ideas section (Part I) in this publication discusses how important the concepts of evidence-based medicine and value-based care are for this. Much has been derived from it, but on essential points there is also a deliberate deviation from value-based healthcare. For the authors and editors of this publication, care is not about abstract economic value in a market of supply and demand, but about what is of personal value to the patient. This could lay the groundwork for a European initiative on value-based healthcare that fits with our social values. The Conditions section (Part III) addresses how a hospital organization can stimulate the creation and performance of learning interdisciplinary teams and which forms of funding help to bring personalized care to a much higher level. It contains inspiring insights for everyone who wants the best for patients, healthcare providers, and healthcare. If this publication teaches us anything, it is that collaboration in and for healthcare is well worth the effort: collaboration between different specializations and disciplines in teams that take responsibility for the care of a clinical profile as well v

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as collaboration between healthcare professionals and the organization, between university medical centers, hospitals, and institutions in a region, and between healthcare providers and insurers. In addition: the collaboration of the eight university medical centers in the NFU consortium Kwaliteit van Zorg, with one goal: to improve patient outcomes and experiences in university medical center practice and in the region. We see what can be achieved by working together on the quality of care. For National Health Care Institute, the NFU consortium Quality of Care is therefore a unique collaboration partner within the Academic Collaboration Center for Healthcare Practice and Policy. At the Academic Collaboration Center, we are jointly investigating how we can better connect the “system world” of legislation and policy to the “living world” of healthcare providers and patients in the workplace, because only together can we ensure that every Dutch person is guaranteed good care, now and in the future. After the first year of the fight against the COVID-19 pandemic, the strength of collaboration really needs no further explanation. So let us keep working together. And let this publication be a source of inspiration for that. Sjaak Wijma National Health Care Institute Amsterdam The Netherlands

Contents

Part I Ideas 1 Introduction������������������������������������������������������������������������������������������������   3 Nico van Weert and Jan Hazelzet 2 Personalized Health Care as Value-Based Care��������������������������������������   7 Jan Hazelzet and Nico van Weert 3 Evidence-Based Medicine and Personalized Health Care����������������������  17 Dirk Ubbink and Dink Legemate Part II Practices 4 Treatment Decisions Based on Treatment Goals of Oncogeriatric Patients��������������������������������������������������������������������������  25 Barbara van Leeuwen and Maarten van der Laan 5 Personal Attention to the Patient in the Pituitary Tumor Health-Care Pathway��������������������������������������������������������������������������������  31 Wouter van Furth and Nienke Biermasz 6 Personalized Health Care for Orofacial Cleft Patients��������������������������  41 Chantal van der Horst 7 Multidisciplinary Improvements in the Nephrology Outpatient Clinic����������������������������������������������������������������������������������������  49 Fenna van Breda, Marije van der Steen, and Martine de Bruijne 8 Healthcare Monitor Supports Value-­Based Health Care for Head and Neck Cancer Patients ������������������������������������������������������������������������  55 Marinella Offerman, Emilie Dronkers, and Rob Baatenburg de Jong 9 E-Health Application IkHerstel: A Textbook Example of Value-Based Care����������������������������������������������������������������������������������  63 Judith Huirne, Eva Bouwsma, and Han Anema

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10 From Care Pathway to a Personalized Metro Network ������������������������  71 Marion van der Kolk, Arjan Kouwen, Joris Fuijkschot, and Ingeborg P. M. Griffioen 11 Value-Based Health-Care Pathway for Patients with Turner Syndrome������������������������������������������������������������������������������  79 Ramon Dykgraaf, Allard van den Hoven, and Helen Mijnarends-Akkermans 12 SMART-IBD: Better Health Care from the Patient’s Perspective��������  87 Marieke J. Pierik, M. L. Tineke Markus-de Kwaadsteniet, and Gerard Dijkstra 13 Better Experiences for Inflammatory Arthritis Patients Through Value-Based Patient Journey��������������������������������������������������������������������  95 Angelique Weel, Marc Kok, and Deirisa Lopes Barreto 14 Cardiometabolic Health-Care Network: The Right Care in the Right Place Through Customized Treatment������������������������������������������ 101 Karin Kaasjager, Monique Prinssen, and Dorien Zwart 15 Integrated Health Care for Ischemic Stroke Patients���������������������������� 109 Bob Roozenbeek, Markus P. J. M. Wijffels, and Bianca I. Buijck 16 Working with Outcomes in Perinatal Care �������������������������������������������� 119 Alies Depla, Lyzette Laureij, and Hiske Ernst-Smelt 17 The State of Patient-Centered Breast Cancer Care: An Academic Center’s Experience and Perspective ������������������������������������������������������ 127 Arvind Oemrawsingh, Jan Hazelzet, and Linetta Koppert Part III Conditions 18 Organizational Foundation for Personalized Health Care�������������������� 139 Nico van Weert and Piet ter Wee 19 Interprofessional Learning and Working������������������������������������������������ 153 Lia Fluit, Marion Verduijn, and Saskia Peerdeman 20 Using Regional Funding to Achieve Transparent and Personalized Health Care�������������������������������������������������������������������������� 161 Bart Noort, Mart van de Laar, and Kees Ahaus NFU Consortium Quality of Care������������������������������������������������������������������  169 Afterword����������������������������������������������������������������������������������������������������������  171

Part I Ideas

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Introduction Nico van Weert and Jan Hazelzet

Abstract

In the Netherlands, there is a lot going on with respect to value-based care [1, 2], and it is being discussed even more [3]. This book is about what it can yield in practice: for the patient and the health-care professional. It is our conviction that the interaction between those two parties is where its value should be demonstrated, and we have chosen practices where this is the case. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Shared decisionmaking · Outcome measurement · Interprofessional learning · Patient participation · Quality improvement Our quality improvement work is primarily guided by outcome measures, especially measures of intended or desired outcomes. This is where our approach distinguishes itself from sheer guideline implementation and safety management, which tends to give primacy to the process of care [4] or the measurement of only the outcomes we try to avoid, i.e., surgical complications and failure to rescue [5]. Intended or desired outcomes can be clinically defined and “clinician-reported” or can be patient-reported using patient-reported outcome measures (PROMs). This

N. van Weert (*) Society Personalized Health Care, Nijmegen, The Netherlands J. Hazelzet Center for Value Based Health Care, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_1

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approach is supported well by the Value-Based Health Care model and the internationally developed sets of outcome measures which recognize and operationalize outcome quality as a multidimensional phenomenon [6, 7]. However, we feel quality is not well represented by just the health status after treatment or the improvement compared with health status before treatment. On the contrary, it should start by setting out a treatment goal that is agreed upon in advance. Outcome quality should be defined as the degree to which the intended goal is achieved. This means that, for optimal quality, care must be precisely attuned to the patient as a person. This insight leads to reflections and learnings such as in the following examples. You have been able to surgically remove the most difficult tumors, but one day you realized that maybe it was not the best course of action for all diagnosed patients. Later you found out how you could recognize the cases for which it is not. Now your team has a fixed routine to arrive at the best solution with the patient. You used to feel like the people’s doctor, someone who had great communication with patients. But one day you started asking them to talk about how they were doing personally. In the “patient-reported outcomes”, you noticed that you had completely missed an important part of their everyday functioning. Later you include a structural focus on this aspect in your outpatient clinics. In keeping with the traditional practice of your profession and the scheduling principles at your hospital, you were seeing your chronic patients once a year—and of course “as needed” in the meantime. Then you noticed that your data was telling you that you had been seeing your patients too early or too late, but rarely at the time that they would benefit from it the most. Later you discover how to offer the consultation at just the right moment: based on early signals and often before the patient contacts the outpatient clinic themselves. That is what value-based care is about in practice: the care means more to the patient when it is tailored to their situation. Recognizing the important needs, preferences, and values of patients and structurally tailoring the care to them—that is the noble craft of personalized care. We agree with Gray’s operational definition of personalized care: “The clinician’s job is (…) to relate (…) evidence to the unique clinical condition of the patient and to create a context in which the patient can be allowed to reflect on their values, the values they attach to different options that may occur, both good and bad, and the value they place on risk-taking or risk avoidance” [8], and add the necessity of good timing of care. Furthermore, Gray et al. correctly see personalized health care as part and parcel of person-centered care [8]. It is a very essential part in our opinion, although until now it has not received the attention it deserves. This book aims to share the inspiration of the pioneers in this field and the fruits of their labor with professional colleagues, leaders in care, and an interested audience. This is done in the Practices section (Part II) and includes many practical solutions and the use of tools to achieve them, such as a visual prioritization tool for patients to rate diverse treatment goals, which provides a powerful start for a dialog about treatment options. An individual dashboard on health outcomes enables sharing and discussing statuses as well as anticipating patient needs. Visualizing the patient journey and the care pathway allows us to stay organized as a

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multidisciplinary team. In particular, the model of the metro network, supported by the method Metro Mapping [9], provides clear options for putting an effective shared decision-­making into place, designing a comprehensive division of tasks and roles, and creating a consistent information flow. Many other innovations, like e-health and bundled payment, make their contributions to help create personalized medical care, which itself takes center stage in this book. Before health-care practices (in the Practices section (Part II)), we describe the essence of personalized care and establish a link with value-based care and evidence-­ based medicine (in the Ideas section (Part I)). The final section (Conditions (Part III)) discusses organizational and other types of conditions that are required for personalized care to flourish. We are confident that our readers will be enthusiastic and feel supported in finding their own way in personalized care.

References 1. NFU Kwaliteit | Waardegedreven Zorg. https://nfukwaliteit.nl/programmas/waardegedreven-­ zorg/. Accessed 22 Nov 2020. 2. VBHC Research Group  - Santeon. https://santeon.nl/onze-­aanpak/projecten/vbhc-­ onderzoeksgroep/. Accessed 22 Nov 2020. 3. Steinmann G, van de Bovenkamp H, de Bont A, Delnoij D.  Redefining value: a discourse analysis on value-based health care. BMC Health Serv Res. 2020;20(1):1–13. https://doi. org/10.1186/s12913-­020-­05614-­7. 4. Wensing M, Grol R. Knowledge translation in health: how implementation science could contribute more. BMC Med. 2019;17(1):1–6. https://doi.org/10.1186/s12916-­019-­1322-­9. 5. Pronovost PJ, Thompson DA, Holzmueller CG, Lubomski LH, Morlock LL.  Defining and measuring patient safety. Crit Care Clin. 2005;21(1):1–19. https://doi.org/10.1016/j. ccc.2004.07.006. 6. ICHOM | ICHOM Standard Sets | View Our Collection. https://www.ichom.org/standard-­ sets/#methodology. Accessed 22 Nov 2020. 7. What is QOL? | ISOQOL. https://www.isoqol.org/what-­is-­qol/. Accessed 22 Nov 2020. 8. Gray M, Gray J, Howick J. Personalised healthcare and population healthcare. J R Soc Med. 2018;111(2):51–6. https://doi.org/10.1177/0141076817732523. 9. Metro Mapping. www.metromapping.org. Accessed 22 Nov 2020.

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Personalized Health Care as Value-Based Care Jan Hazelzet and Nico van Weert

The value of care is primarily related to the consultation room and not to a market of supply and demand. The severity of symptoms was found to decrease by using PROMs, and physical function improved. “The inspiring effect that value-based health care has affects everyone, from politicians to insurers, and from healthcare administrators to medical or nursing professionals.”

Abstract

“I do not understand the way that you treat patients,” said a resident to the medical specialist who had just seen two patients with pain in the hip joint. “You prescribed heavy pain medication to one, but only some paracetamol to the other even though they have the same symptoms?” However, one played pool several times a week and the other sat at home on the couch. That non-medical difference was one of the factors that led to a different balance between the pros and cons of heavy pain medication in patients who presented with the same symptoms and disorders (Van Bruchem-Visser, personal communication, 28 November 2018). This sensitivity is fundamental in value-based care: the treatment helps a patient best if it is tailored to their personal needs, preferences, and values. We have to use that as our compass if we want to improve “patient experiences and

J. Hazelzet (*) Center for Value Based Health Care, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] N. van Weert Society Personalized Health Care, Nijmegen, The Netherlands © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_2

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outcomes” in health care, as the Dutch university medical centers and others aim to do. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Shared decision-­ making · Outcome measurement · Interprofessional learning · Patient participation · Quality improvement Personalized health care breaks with the idea that good health care is “care according to the guidelines.” That was the formal policy of the Dutch government just 5 years ago [2]. But there is no such thing as an average patient, and the progression of a disease can vary. Responding to these differences not only justifies variation in care, it also necessitates it. Long live variation, as long as it offers an answer to the personal needs, preferences, and values of the patient. In other words, the value to the patient is linked to the extent that the health care provided is attuned to their situation. Two years ago, together with opinion leaders from university medical centers using this principle as our foundation, we formulated what the important characteristics of value-based care are. The Board of the Netherlands Federation of University Medical Centers has endorsed this course of action [3]. This approach currently consists of four elements: 1 . The right conversation with the patient. 2. Collaboration between health-care professionals with different backgrounds and specializations. 3. An overview of outcomes and costs. 4. Shared learning to improve health care. An important difference here with the Value-Based Health Care concept of Porter and Teisberg [4] is that to our opinion the value of care is primarily related to the consultation room and not to a market of supply and demand. To emphasize the importance of individual customization for value creation, we discuss personalized care.

2.1

The Genuine Conversation

The genuine conversation is a metaphor for the continuous adjustment of care to the needs, preferences, and values of the patient [5]. Essentially, it requires that all care is tailored to the person and personal situation of the patient. Carla Bastemeijer et al. have done an extensive content analysis of what patients find important. As far as the health-care provider is concerned, this is professionalism, responsiveness, and compassion, while the patient looks for autonomy and uniqueness; with respect to interactions partnership and empowerment are held in high regard [6]. This clearly shows the tasks in the health-care process.

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We see the patient as a partner in health care, with whom the health-care team decides on treatment options. In 2015, Anne Stiggelbout and her colleagues described the four steps that joint decision-making should consist of [7]. Step 1 is that the health-care provider informs the patient that a decision is to be made and that the patient’s engagement in this process is important. In practice, it is necessary to make a decision more than once. In step 2, the health-care provider explains the options and their pros and cons. Expected clinical and patient-­reported outcomes are part of this explanation. In order to make an informed decision, it is important to specifically tailor these prospects to the patient’s situation. Step 3 was then distinguished in a new way: the health-care provider and the patient discuss the patient’s preferences, and the health-care provider supports the patient in the deliberations. Glyn Elwyn and others added the same element to the revised “Three-Talk Model” based on the terms team talk, option talk, and decision talk. It depicts how the patient’s values play a role in the decision-making regarding treatment [8]. They provide the frame of reference for the assessment of treatment options (see Chap. 4) [9]. Step 4, finally, works toward the actual decision. Apart from the moment of fundamental treatment decisions, up-to-date information about the patient’s specific situation is also needed during the further care process and decision making. This brings us to the importance of measuring outcomes, patient-reported outcomes in particular.

2.2

Measuring and Discussing Outcomes

The American Institute of Medicine recommends routine outcome measurements in health care based on experiences at Intermountain Healthcare, Kaiser, and other organizations [10]. Porter distinguishes three levels of outcomes [11]. Tier 1 concerns the health status achieved or retained. Tier 2 deals with the process of recovery, in particular the time to recovery and time to return to normal activities, and also the arising complications and inconveniences. The sustainability of health is the subject of tier 3: recurrences and long-term consequences of treatment. He proposes the systematic measurement of outcomes at each of these levels. ICHOM has already published outcome sets for 39 conditions [12]. Dutch specialists contributed extensively to this, and ICHOM ensured the involvement of patients. The sets include both clinical outcome measures (such as blood sugar levels (HbA1c) and the survival of a transplanted kidney) and patient-reported outcomes (PROMs, such as pain, fatigue, physical function, and quality of life). This has led to a development in which we increasingly find it self-evident to routinely follow desired healthcare outcomes. The results are then used both in the consultation room and to improve health care. This changes not only what is discussed (outcomes that matter to the patient) but also how it is discussed: the use of PROMs contributes to the creation of the health-­care provider–patient relationship [13]. A review by Van Egdom et al. on the use of PROMs shows that participating patients experience benefits themselves. For example, the severity of symptoms was found to decrease compared to groups in which no PROMs were used, and physical

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function improved [14]. The authors cite a randomized controlled trial with 776 patients in oncology that even found a substantial effect of PROM application on quality of life and survival. Even if results are not always discussed in the consultation room, they conclude, collecting PROMs has a positive effect. We know, however, that the response will increase further if this does happen: if filling in the PROM contributes to personalization of the treatment, the motivation increases accordingly [15]. Targeted use is further facilitated by reference values that allow the patient to be informed in advance about expected outcomes and during treatment about positive or negative anomalies. Lagendijk et al. already collected reference values for breast cancer in a study among former patients [16]. Moreover, among other items, it turned out that sexual functioning left much to be desired during and after the treatment, which led to adjustments in the health-­care pathway. The latter is an example of the use of outcome data for learning and improvement in health care. If outcome data is now collected by default from all patients with a particular condition, then learning and improving can also be a continuous activity. Cost and process data must be added more often than at present so that continuous learning and improvement can also be about the optimal ratio of results achieved and efforts made (see Chap. 15) [17]. In short, outcome measurements can play a major role in improving health care, both for the patient in the consultation room and for the clinical case. This while the assumed burden for the patient to fill in these questions seems to be not so significant in practice [18].

2.3

Collaboration and Shared Learning

We distinguish two other pillars of value-based health care in the NFU position paper: Interprofessional collaboration and shared learning for better health care. The essence of interprofessional collaboration is that the strengths of multiple care disciplines and professions for the patient are combined into one coherent treatment, including diagnostics, follow-up, and aftercare, by a closely collaborating team and network. “Shared learning” refers to the joint reflection on outcomes achieved for patients and the improvement thereof by adjusting the process, then measuring and evaluating the outcomes again. Both subjects are discussed in detail in Chap. 19 [19].

2.4

Actively Working on Improvement

In this way, value-based care develops into a tool for optimizing health-care practice based on locally experienced and prioritized problems. The constant ingredients lead to solutions found by the interprofessional team. This seems to contribute to the motivation of health-care professionals to work on value-based care because “Our ambition as a physician has always been to improve care for and together with

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patients,” says Fenna van Breda and her colleagues (see Chap. 7) [20]. We see that a growing circle of professionals becomes convinced after going through the first steps and that teams that have mastered learning and improvement based on outcomes are eager to continue (see Chap. 5) [21]. The chapters in the Practices section (Part II) of this book show a variety of achieved solutions for personalized health care. Below we provide an outline of this diversity and refer to the relevant chapters. When patients experience or find other outcomes more important than previously assumed, a structural adjustment of outpatient care follows (see Chap. 17) [22]. However, what we see more often is that the need appears to vary between patients and moments of care. The team recognizes that standard outpatient care is insufficient and is looking for ways to respond flexibly to current personal needs. In many cases, PROMs are used structurally for this purpose. Measurements taken shortly before the outpatient clinic visit provide an up-to-date picture of what matters most to the patient. In some situations, the outpatient clinic preparations are organized in such a way that other or additional disciplines can already respond to current events during the consultation. The MDT (multi-disciplinary consultation) described in this book for patients with Turner’s syndrome is an example of this (see Chap. 11) [23]. In other cases, the primary treatment provider discusses current needs detected by the PROM measurements with the patient first before referring for additional care, if necessary (see Chap. 13) [24]. Other situations allow PROMs to be used to determine whether a consultation is necessary or the better option: when it is necessary, for example, by using the IBDCoach™ (see Chap. 12) [25]. This of course only works if the patient can be seen immediately. In the case of IBD care, this turned out to be possible and made the care more efficient [26]. In addition to PROMs, algorithms are also used to personalize health care. For example, IkHerstel combines preferences and developments to give advice for working on recovery after an operation, again with a considerable gain in efficiency (see Chap. 9) [27]. And, thanks to U-prevent, people at risk of metabolic disorders gain insight into the expected outcomes of long-term medication therapy and quitting smoking (see Chap. 14) [28]. The algorithms have added value because they are part of a solid interprofessional collaboration. Attention to outcomes also leads to a more effective use of care in other ways. For example, a large number of referrals to the rheumatologist proved to be unnecessary: now, thanks to a digital referral assistant, care is often provided through primary care (see Chap. 13) [24]. The Cardiometabool Zorgnetwerk achieved the same result with a teleconsultation platform, where general practitioners can obtain easily accessible specialist advice (see Chap. 14) [28]. More generally, collaboration between different tiers of health care can help personalize health care (see Chaps. 10 and 16) [29, 30]. It has already been shown in cerebrovascular health care that such collaboration must be focused on the final outcomes for patients (see Chap. 15) [17]. This brings us to a general lesson that can be learned from the practices. The driver for success is always that colleagues from different disciplines aim to find out together what treatments mean in the patient’s life. The health care is then adapted to optimize outcomes for the patient. Care is personalized to their needs, preferences, and values. Solutions are always specific, but have in common that the

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consultation focuses on what matters most to the patient and that interprofessional collaboration is concerted to that end. Depending on the situation, the circle of colleagues may include various specialisms, disciplines, and tiers. The patient is also becoming a greater part of the team and network: they make decisions, participate actively, and have shared responsibility. This increases their satisfaction with the results achieved (see Chap. 6) [31]. We also learn that ICT solutions can facilitate personalized health care, such as by following outcomes (see Chap. 8) [32], through early detection or continuous monitoring (see Chap. 12) [25], by stimulating personalized health-promoting behavior (see Chap. 9) [27], but especially by making the right data available to other health-care providers within the hospital at the right time. The exchange of data among institutions and between institutions and the primary care and at home will quickly be adapted to ensure seamless cooperation in the region (see Box 2.1 for a current example). Given the variety of applications used, a data platform where data from different sources can be combined seems to be an indispensable element to achieve this [33].

Box 2.1 The Box: Effective Monitoring and Treatment at Home

Innovation by Collaboration Onno Teng and Douwe Atsma Leiden University Medical Center (LUMC) is strongly committed to digital care. The sustainability of the current health-care model is buckling under the weight of an aging population, the increasing complexity of patient health care, and resources and personnel with decreased availability. In order to balance the increasing demand for care with the financial and human resources available, the current high-quality care needs to be provided at lower costs and with fewer personnel. eHealth seems to be a promising development to enable this restructuring of the health-care system. In addition, eHealth also seems suitable for prevention and lifestyle guidance. In 2015, eHealth was introduced in the LUMC for standard patient care. For this purpose, “The Box,” for patients who had suffered a heart attack, was developed. It is a box of measuring equipment including a scale, activity/sleep monitor, blood pressure monitor, and ECG monitor. Using apps, the data is sent to LUMC and is visible in the EHR. Half of the traditional outpatient visits have been replaced by video consultations. Scientific evaluation showed that The Box is as effective as traditional health care, at a lower cost, and with high patient satisfaction. Patients appear to be more aware of their physical status. The Box was then further developed in collaboration with other specializations for patients with heart failure, atrial fibrillation, or post heart surgery. The Box is currently being rolled out to other patient groups with diabetes, malignancies, hematological disorders, and pregnant women with hypertension. The Box will also soon be used by the GP for Cardiovascular Risk Management (CVRM). A recent development is the COVID Box.

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Through measurements at home (oxygen saturation, respiratory rate, heart rate, temperature, and blood pressure) and daily contact with LUMC, patients with a proven or suspected COVID-19 infection can go home earlier or do not need to be admitted. The positive experiences gained during the COVID-19 pandemic have led to the fact that the Box concept is now going to be used more widely in LUMC, in both medical and surgical departments as well as outpatient clinics. In this way, vulnerable patients do not have to come to the hospital but can receive health care at home via The Box. We anticipate that the Box concept will soon lead to a very substantial reduction in the number of in-person physician–patient contact times, while maintaining effectiveness and additional opportunities to respond to current individual needs.

Barbara van Leeuwen, together with Maarten van der Laan, shows that sometimes a great deal is possible without advanced IT in health care through the way her team talks to patients about treatment goals that are most important to them. The Practices section (Part II) of this book starts with their contribution (see Chap. 4) [9].

2.5

Contributions by Other Players

In his farewell speech, Kievit already praised the “inspiring effect that value-based healthcare has” because it “affects everyone, from politicians to insurers, and from healthcare administrators to medical or nursing professionals” [34]. This effect is beneficial in terms of support and context and is important because the development of value-based care does not take place exclusively between the health-care provider and the patient. The whole institution will have to focus on it, and stakeholders such as insurers and inspection agencies are also involved. That is why we work with them and experience increasing support, such as for focusing on quality that matters most [35]. An example is the stroke care in Rotterdam, where a contract has been drawn up with several partners in a network collaboration, aimed at bundled payments and shared savings/losses on the basis of final results. There is a willingness to suspend national lists of accountability obligations in order to provide room for improvements based on locally experienced opportunities and needs. The movement has become widespread. Compelling examples of what is achieved for patients sustain the motivation of many people. Together, we want to ensure that these developments do not remain isolated, but that they jointly deliver their benefits for health care and ultimately the health of the population.

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References 1. Van Bruchem-Visser R. Persoonlijke communicatie; 28 Nov 2018. 2. Inspectie voor de Gezondheidszorg, Ministerie van Volksgezondheid, Welzijn en Sport. Voor een gerechtvaardigd vertrouwen in verantwoorde zorg (II). Meerjarenbeleidsplan 2012–2015. Utrecht; 2011. 3. NFU.  Position paper Waardegedreven Zorg. Utrecht. 2019. https://nfukwaliteit.nl/pdf/NFU-­ Position_Paper_Waardegedreven_Zorg.pdf. 4. Porter ME, Tiesberg E. Redefining health care, creating value-based competition on results. Harvard, MA: Harvard Business School Publishing; 2006. 5. Frampton SB, Guastello S, Hoy L. Harnessing evidence and experience to change culture: a guiding framework for patient and family engaged care. Conversation paper. IOM (Institute of Medicine); 2017. 6. Bastemeijer CM, Voogt L, van Ewijk JP, et  al. What do patient values and preferences mean? A taxonomy based on a systematic review of qualitative papers. Patient Educ Couns. 2017;100(5):871–88. 7. Stiggelbout AM, Pieterse AH, De Haes JCJM. Shared decision making: concepts, evidence, and practice. Patient Educ Couns. 2015;98(10):1172–9. 8. Elwyn G, Durand MA, Song J, et al. A three-talk model for shared decision making: multistage consultation process. BMJ. 2017;359:j4891. https://doi.org/10.1136/bmj.j4891. 9. van Leeuwen B, van der Laan M. Treatment Decisions Based on Treatment Goals of Oncogeriatric Patients. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 10. IOM (Institute of Medicine). Best care at lower cost: the path to continuously learning health care in America. Washington, DC: The National Academies Press; 2012. 11. Porter ME.  What is value in health care? N Engl J Med. 2010;363:2477–81. https://doi. org/10.1056/NEJMp1011024. 12. ICHOM.org. Accessed 11 Feb 2021. 13. Greenhalgh J, Gooding K, Gibbons E, et  al. How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient Rep Outcomes. 2018;2:42. https://doi.org/10.1186/s41687-­018-­0061-­6. 14. van Egdom LSE, Lagendijk M, van der Kemp MH, et  al. Implementation of value based breast cancer care. Eur J Surg Oncol. 2019;45(7):1163–70. https://doi.org/10.1016/j. ejso.2019.01.007. 15. van Egdom LSE, Oemrawsingh A, Verweij LM, et  al. Implementing patient-reported outcome measures in clinical breast cancer care: a systematic review. Value Health. 2019;22(10):1197–226. https://doi.org/10.1016/j.jval.2019.04.1927. 16. Lagendijk M, van Egdom LSE, van Veen FEE, et  al. Patient-reported outcome measures may add value in breast cancer surgery. Ann Surg Oncol. 2018;25(12):3563–71. https://doi. org/10.1245/s10434-­018-­6729-­6. 17. Roozenbeek R, Wijffels M, Buijck B. Integrated Health Care for Ischemic Stroke Patients. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 18. Atkinson TM, Schwartz CE, Goldstein L, et  al. Perceptions of response burden associated with completion of patient-reported outcome assessments in oncology. Value Health. 2019;22(2):225–30. https://doi.org/10.1016/j.jval.2018.07.875. 19. Fluit L, Verduijn M, Peerdeman S. Interprofessional Learning and Working. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 20. van Breda F, van der Steen M, de Bruijne M. Multidisciplinary Improvements in the Nephrology Outpatient Clinic. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Valuebased Healthcare Frontrunners from The Netherlands. Springer; 2021.

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21. van Furth W, Biermasz N. Personal Attention to the Patient in the Pituitary Tumor HealthCare Pathway. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 22. Oemrawsingh A, Koppert L. The State of Patient-Centered Breast Cancer Care: An Academic Center’s Experience and Perspective. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 23. Dykgraaf R, van den Hoven A, Mijnarends-Akkermans H. Value-Based Health-Care Pathway for Patients with Turner Syndrome. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 24. Weel-Koenders A, Kok M, Lopes Barreto D. Better Experiences for Inflammatory Arthritis Patients Through Value-Based Patient Journey. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 25. Pierik MJ, Markus T, Dijkstra G. SMART-IBD: Better Health Care from the Patient’s Perspective. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 26. de Jong MJ, van der Meulen-de Jong AE, Romberg-Camps MJ, Becx MC, Maljaars JP, Cilissen M, van Bodegraven AA, Mahmmod N, Markus T, Hameeteman WM, Dijkstra G, Masclee AA, Boonen A, Winkens B, van Tubergen A, Jonkers DM, Pierik MJ. Telemedicine for management of inflammatory bowel disease (myIBDcoach): a pragmatic, multicentre, randomised controlled trial. Lancet. 2017;390(10098):959–68. 27. Huirne J, Bouwsma E, Anema H. E-Health Application IkHerstel: A Textbook Example of Value-Based Care. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Valuebased Healthcare Frontrunners from The Netherlands. Springer; 2021. 28. Kaasjager K, Prinssen M, Zwart D. Cardiometabolic Health-Care Network: The Right Care in the Right Place Through Customized Treatment. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 29. Depla A, Laureij L, Ernst-Smelt H. Working with Outcomes in Perinatal Care. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 30. van der Kolk M, Kouwen A, Fuijkschot J, Griffioen IPM. From Care Pathway to a Personalized Metro Network. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 31. van der Horst CMAM. Personalized Health Care for Orofacial Cleft Patients. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 32. Offerman M, Dronkers E, Baatenburg de Jong R. Healthcare Monitor Supports Value Based Health Care for Head and Neck Cancer Patients. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 33. Van Merode F. Waardegedreven zorg vraagt aanpassingen aan IT. Qruxx; 11 juli 2019. https:// www.qruxx.com/waardegedreven-­zorg-­vraagt-­aanpassingen-­aan-­it/. 34. Kievit J. Zorg en Kwaliteit: van individu naar system, naar beide. Universiteit Leiden (afscheidsrede); 2017. 35. Begeleidingscommissie Anders Verantwoorden van het NFU-consortium Kwaliteit van Zorg. Verslag ronde tafel anders verantwoorden over kwaliteit: Van registratielast naar verbeterlust. https://nfukwaliteit.nl/pdf/Verslag_Ronde_Tafel_Anders_Verantwoorden_definitief.pdf. Updated 12 May 2020.

3

Evidence-Based Medicine and Personalized Health Care Dirk Ubbink and Dink Legemate

Our clinical expertise is needed to determine whether the available evidence can be applied to the patient’s condition, characteristics, and preferences.

Abstract

Medicine in the twentieth century was practiced by highly esteemed physicians trained by even more esteemed professors, whose statements you would not dare to question. With the rise of scientific research and discoveries, new medicines, surgical techniques, and insights into the origin of diseases emerged. A peptic ulcer, for example, was initially seen as a manager’s disease due to stress and excessive gastric acid, for which sometimes even extensive, risky surgical procedures were performed. This approach changed radically after the discovery of the bacterium causing the disease (Helicobacter pylori). Barry Marshall was awarded the Nobel Prize for this discovery in 2005. Treatment using medicine became the standard and surgeries disappeared.

D. Ubbink (*) · D. Legemate Department of Surgery, Amsterdam University Medical Centers, location Academic Medical Center, Amsterdam, The Netherlands e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_3

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Keywords

Value-based Health Care · Personalized Care · Quality of Care · Evidence-based medicine · Shared decision-making · Modern medicine · State-of-the-art · Clinical expertise · Patient preferences · Criticism

3.1

Modern Medicine

In today’s twenty-first century, professors and every other health care professional must base their views on evidence and may even be challenged by their students. Insights based on scientific data are changing at an ever-increasing rate. Another factor is that patients in our society are changing. Chronic diseases are more common due to aging, multimorbidity, and changing cultures. What is taught to students now may be obsolete in 5  years of time. This means that students, and also the established order of health care (passim) professionals, have to continuously learn to keep up with their field of expertise (“lifelong learning”) by searching for and critically assessing the best available evidence, instead of relying on their own experience or the opinion of experts. This opinion can be biased by the limited range of patients that the expert has encountered and the good or bad experiences that are associated with a particular course of action.

3.2

Evidence-Based Medicine

Constantly learning about your profession by using recent and relevant evidence from the medical literature on a current clinical dilemma is what the evidence-based medicine (EBM) philosophy, or the more general term evidence-based practice, advocates. EBM was introduced in the Netherlands in the 1990s, after it had previously been developed by its founders (David Sackett and Gordon Guyatt) at McMaster University in Hamilton, Canada, in response to the growing volume of scientific publications that were rarely applied in practice [1]. This way of thinking and acting is particularly relevant today because of the described volatility of medical knowledge and the way in which we nowadays deal with science and opinions (“alternative truths,” “the truth is just an opinion too”), conflicting evidence, and controversies in the media about current medical affairs. One definition of EBM is “the explicit, informed and conscientious use of the best available evidence in making a choice of treatment for a patient” [2]. This definition from the Dutch EBM textbook makes it clear that we should not only rely on our expertise but also adapt or correct it if necessary by using the best available evidence from the medical literature. This requires a critical attitude towards our medical actions and a critical assessment of the validity and applicability of the available literature.

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3.3

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Criticism of EBM

Throughout the years, EBM has been criticized by some [3], or dismissed as “cookbook medicine,” believing that the individual situation and wishes of the patient were not taken into account and that only the highest level of evidence, such as a randomized clinical trial (RCT), was considered a guiding principle for health care choices. The RCT is the best study design that science has to offer nowadays to establish a causal link between an intervention and a desired or undesired outcome, in order to demonstrate the effectiveness of a treatment. However, not all available evidence consists of RCTs and not every trial has been conducted to the same standard. Not every scientific study lends itself to a randomized approach, so other study designs may also be relevant. Therefore, EBM does not glorify RCT as the only way to gather evidence, but rather to take the results of available evidence into account. After all, a patient expects a health care professional to offer the most effective treatment according to the latest available evidence. Critical reports, such as that of the Raad voor Volksgezondheid en Samenleving (Council for Public Health and Society), speak of “the illusion of evidence-based practice in health care” [4] because this idea would not take the context in which the patient and the health care system find themselves into account. The opposite is true. After the introduction of the concept of EBM, it became much clearer that work is often done under uncertain circumstances, the evidence for certain choices is not always solid, and medicine requires individual personalization. Our common sense and clinical expertise is needed to determine to what extent the available evidence can be applied to the patient’s condition, characteristics, and preferences: in other words, whether we provide personalized health care. Nor has it ever been the intention of EBM to ignore the patient’s individual choice and context when making decisions [5]. Through—or in spite of—these critical statements, the EBM paradigm has evolved by focusing on research that was conducted in a more methodologically sound fashion [6], the less rigid application of evidence-based guidelines [7], and to give more attention to personalized care [8, 9]. This has led to the development of the complementary concepts of “shared decision-making” and “value-based health care” as modern paradigms in health care, alongside and in addition to EBM [10].

3.4

Shared Decision-Making and Value-Based Health Care

Critically applying evidence to the individual situation of the patient means that the health care professional does not make decisions for, but with the patient about the best course of action. The patient’s autonomy and expertise through experience is just as relevant in making a decision as the expertise of the health care professional through medical education. Even despite evidence pointing to treatment A, the health care provider and patient may make a motivated decision to undergo treatment B if the patient’s situation so requires. This decision-making process is receiving more and more attention, in terms of “joint decision-making,” “deciding

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together,” or “shared decision-making” (SDM) [11], from the government, patient, and professional organizations [12]. The principles of EBM and shared decisionmaking are also recognized in modern, value-based health care [9]. This improvement strategy aims to improve health care—and to keep it affordable—by making use of outcomes that are important to patients. These outcomes (the evidence) provide patients with insight into the health care process and the choices that need to be made together with the health care professional. These three principles are increasingly being integrated in order to provide high-quality, personalized care [13]. The concepts of shared decision-­making (treating the patient as a partner) and valuebased health care are discussed further in this publication (Box 3.1). Box 3.1 Clinical Examples

An 80-year-old patient with an abdominal aneurysm with a diameter of 6.0 cm visits the vascular surgeon. The patient has no other comorbidities except hypertension, for which he takes medication. In such cases, the evidence-­ based guideline indicates that surgery should be considered [14], so the vascular surgeon discusses the options for endovascular and open surgeries. The patient is not keen on surgery because he cares for his wife, who suffers from dementia, and also because of potential complications, having to be admitted to the ICU, and unclear survival benefits. In consultation with the surgeon, they refrain from surgery for the time being. A 74-year-old patient, coincidentally diagnosed with a 5.1-cm-diameter abdominal aneurysm, is referred to the vascular surgeon. In the past he had a heart attack that he survived thanks to prompt cardiac catheterization. The vascular surgeon clearly explains to him that with the size of the aneurysm there is no reason to operate (according to the same guideline) because the risks of surgery are at least as high as the risk of the aneurysm rupturing if no operation takes place. However, in the weeks following the consultation, the patient is very worried about the fact that he now has a “ticking time bomb” inside of him that is not being dealt with. His life is dominated by this fear, and he is afraid to do anything anymore. In the next consultation with the vascular surgeon, he therefore insists on having a surgery. The vascular surgeon respects the patient’s preference, deviates from the guideline, and adds the patient to the operation schedule.

3.5

EBM as a Prerequisite for Good Health Care

The ultimate goal of EBM is to improve the quality of health care so that it leads to a higher quality and quantity of life for the individual patient. The application of EBM therefore does not necessarily entail cost savings and cannot be used as a management tool to reduce health care costs by only providing—or reimbursing for—treatment if it is proven to be effective. After all, scientific research does not

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tell the health care professional what to do, but provides the rational arguments for or against a certain action. EBM does remain useful for reducing unnecessary, ineffective health care, and unwanted variation in care. After all, there are still too many unproven health care procedures, while many evidence-based interventions have not yet sufficiently made their mark in health care. This makes evidence-based health care including shared decision-making and value-based health care a fundamental condition for good, personalized care.

References 1. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn’t. BMJ. 1996;312(7023):71–2. 2. Scholten RJPM, Offringa M, Assendelft WJJ. Inleiding in evidence-based medicine. Klinisch handelen gebaseerd op bewijsmateriaal. 5de herziene druk. Houten: Bohn Stafleu van Loghum; 2018. 3. Hannes K, Aertgeerts B, Schepers R, Goedhuys J, Buntinx F. Evidence-based medicine: een bespreking van de meest voorkomende kritiek. Ned Tijdschr Geneeskd. 2005;149:1983–8. 4. Raad voor Volksgezondheid en Samenleving. Zonder context geen bewijs. Over de illusie van evidence-based practice in de zorg. Den Haag; 2017. 5. Bossuyt PMM. Een feitenvrije geneeskunde? Rapport van de Raad voor Volksgezondheid en Samenleving is klap in het gezicht. Ned Tijdschr Geneeskd. 2017;161:D1901. 6. Heneghan C, Mahtani KR, Goldacre B, Godlee F, Macdonald H, Jarvies D. Evidence based medicine manifesto for better healthcare. BMJ. 2017;357:j2973. 7. Burgers JS. Opschudding over evidence based medicine: van reductionisme naar realisme in de toepassing van richtlijnen. Ned Tijdschr Geneeskd. 2015;159(A8367):1–5. 8. Djulbegovic B, Guyatt GH. Progress in evidence-based medicine: a quarter century on. Lancet. 2017;390(10092):415–23. 9. Damman OC, Jani A, de Jong BA, et al. The use of PROMs and shared decision-making in medical encounters with patients: an opportunity to deliver value-based health care to patients. J Eval Clin Pract. 2020;26(2):524–40. 10. Hoffmann TC, Montori VM, Del Mar C. The connection between evidence-based medicine and shared decision making. JAMA. 2014;312(13):1295–6. 11. Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients’ preferences matter. BMJ. 2012;345(e6572):1–6. 12. Federatie Medisch Specialisten. Visiedocument Samen beslissen. Utrecht; 2019. 13. Greenhalgh T, Howick J, Maskrey N.  Evidence based medicine: a movement in crisis? BMJ. 2014;348(g3725):1–7. 14. European Society for Vascular Surgery (ESVS). Clinical practice guidelines on the management of abdominal aorto-iliac artery aneurysms. Eur J Vasc Endovasc Surg. 2019;57:8–93.

Part II Practices

4

Treatment Decisions Based on Treatment Goals of Oncogeriatric Patients Barbara van Leeuwen and Maarten van der Laan

Abstract

For older oncology patients, standard treatment is not always the best, which was something surgeon Barbara van Leeuwen noticed when a patient died after rectal surgery in the nursing home. Her experience was one of the factors that led to the introduction of a specific MDT for the older patient with a solid tumor. This is an innovative procedure that in 27% of the cases leads to a treatment proposal that deviates from standard practice or the advice of the tumor board—but it also leads to satisfied patients. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Elderly · Decision-making · Oncology · Surgery Shortly after Barbara van Leeuwen completed her training, she began working as an oncological surgeon. At that time she mainly operated on patients with colorectal tumors. She still remembers one of those patients clearly. As usual, the day before surgery, she met the patient, a 76-year-old man with a rectal carcinoma. I saw him at the end of the day. He was lying on the bed, alone in a dimly lit room. It was a brief introduction; he did not say much and had no questions. I Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_4) contains supplementary material, which is available to authorized users. B. van Leeuwen (*) · M. van der Laan Department of Surgery, University Medical Center Groningen, Groningen University, Groningen, The Netherlands e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_4

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noticed that he became short of breath quickly: simply getting up from the bed and walking a few meters to the chair was difficult for him. Alarm bells were starting to ring in the back of my mind, but I did not pay attention to it. An experienced colleague had assessed this patient on an outpatient basis, and the operation was technically possible. Age was no reason not to operate, and the anesthetist had also approved this man for the operation. We were going for it. The operation went smoothly, and after just a few days, this patient was discharged to a nursing home for further recovery. I had only seen him twice during his hospitalization, shortly before and after the operation, and saw a nice uncomplicated progression. He was supposed to come back to my colleague at the outpatient clinic to hear that the tumor had been radically removed.

4.1

Joint Decision-Making Was Not a Subject Yet

To my surprise, a few weeks later I received the message that the patient in the nursing home had died of pneumonia and that his brother wanted to talk to me. From those conversations it emerged that the patient was a simple man who had lived with his brother and his wife throughout his adult life. He had not been doing much in recent years due to his COPD. He rarely went outside, watched some television and would sometimes read parts of the newspaper. It was a simple life, but it was sufficient. The fact that this man, with his limited actions and COPD, had developed pneumonia postoperatively was sad, but not exceptional. When I explained this to his brother, he reacted in disbelief; nowhere in the process leading up to the operation had this possible outcome been discussed. If they had known, they might have decided not to operate. Now he lost his brother. I realized that he was right. Why had we not discussed the risks of a relatively substantial operation more clearly? Why was the alternative of doing nothing not discussed? What were the wishes of the patient? All questions I could not answer. I realized that although I had spent years learning technical skills and gaining knowledge about tumor biology, anatomy, and physiology, decision-making had never really come up. You examine whether something is technically possible, explain this to the patient, and then carry out the treatment plan. If a patient does not want this, you either try to convince them or you do not. I had been analyzing the outcomes of older patients after surgery for a few years now, but this had not led to any changes in practice yet.

4.2

Oncogeriatric MDT

After this, we slowly adapted our practice to the growing group of elderly patients. Together with Hanneke Van der Wal (nurse researcher) and Dr. Pauline de Graeff and Dr. Suzanne Festen (both internist geriatricians), the department of radiotherapy and medical oncology, we restructured the care process. This has led to a standalone oncogeriatric MDT for the older patient with a solid tumor.

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In practice, we follow a fixed working method. A trained oncology nurse conducts a semi-structured interview with every outpatient aged 70 years or older with a solid tumor requiring medical treatment [1]. The nurse is also present during the doctor’s consultation with the patient and his family, and later takes over and continues the discussion. During this consultation, a short geriatric assessment is carried out with attention to the physical, psychological, cognitive, functional, and social health of the patient. The Outcome Prioritization Tool (OPT) is used to identify the patient’s wishes and preferences. The OPT is based on goals as formulated by Fried and others [2] and can be used in hospital and GP practices [3]. By using it during the outpatient consultation it becomes clear what the main treatment goals of a patient are: prolongation of life, preservation of independence, or reduction of pain or other symptoms (Fig. 4.1). The results of this consultation (the assessment and the patient’s own preferences) are presented by the nurse during the multidisciplinary consultation. In addition to the treatment provider and the nurse responsible for care, the internist geriatrics is also present at this multidisciplinary team (MDT). In a fixed order, the treatment provider presents the medical/technical information first (often including the treatment proposal according to the guidelines), then the nurse presents the patient-specific information. Life expectancy, survival benefits from treatment, and possible complications are then discussed. Ultimately, the team formulates one or more treatment recommendations that are optimally suited to the needs and abilities of the patient. The treatment provider, often together with the nurse, discusses the MDT outcomes with the patient and his family, after which a final treatment decision is made.

4.3

Results

In 27% of the cases this work method leads to a treatment proposal that deviates from standard practice or the advice of the tumor board [4]. Usually the proposed treatment is less intensive, more often palliative, but occasionally also more intensive (Fig. 4.2). We refer only 10–15% of the patients to an internist geriatrics department based on the results of the assessment. Often this only happens because there is a suspicion of a cognitive disorder or because the degree of vulnerability is insufficiently clear. In addition, geriatric-focused advice is given to reduce the risk of complications during treatment. Because the proposed treatment is often less intensive, the duration of admission is shorter. Patients therefore spend more time in a familiar environment, an important outcome for the quality of life. On the one hand, this work method requires additional time and consequently money, but on the other hand, a less intensive treatment process reduces costs. Because the treatment suits the patient, a vulnerable patient is protected from a process with many complications and functional deterioration.

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Fig. 4.2  Treatment advice according to the tumor board (guideline) or the oncogeriatric MDT of patients for whom the advice differed

4.4

Experiences of Patients and Health-Care Providers

Patients are unanimously enthusiastic about the new way of working and its use. In most cases their main treatment goal is to maintain their independence (41%) followed by prolongation of life (37%) [4]. They feel heard and appreciate being treated and seen as human beings. Patients and family members regularly breathe a sigh of relief when it is explained that we first examine the patient in detail before we make a treatment decision together. Even simply mentioning that an operation is not necessarily the outcome of a visit to a surgeon gives them peace of mind. If a treatment leads to a different result than hoped for, this leads to fewer acceptance problems because the patient and family are included in the decision-making process. Health-care providers are also enthusiastic. It is sometimes difficult for a treatment provider (in this case the surgeon) to properly assess which treatment is right for an older, more vulnerable patient. The MDT acts as a discussion partner. For nurses, this method of working means that they actually have contact with the

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patient, which provides them with a good insight into the person behind the disorder. Their expertise is used in the best way possible.

4.5

Implementation

A limited number of doctors and nurses were involved at the start of this work method. In a safe environment we shared experiences and the uncertainties. Others noticed the positive effect of this: satisfied patients and satisfied health-care providers. In the meantime, it has become standard practice within our department to assess an elderly patient in this way. Nurses still play an indispensable role in the implementation. It appears that they are better able than fellow physicians at bringing the patient’s perspective to the attention of the treatment provider. They are not intimidating and their insight is not perceived as criticism of medical decisions. It remains a challenge to be primarily focused on treating the patient instead of the tumor. This is sometimes related to the experience of doctors (the younger they are, the more action-oriented), but this is not always the case. How a doctor experiences their profession and the relationship with a patient is personal and does not allow for the insights of others to influence them, no matter how promising those insights may be. We do not have a monopoly on the truth, and it remains difficult to choose the best treatment in individual cases: doing something often feels better than doing nothing. By continuing to evaluate and collect results, especially on the quality of life, we will gain even more insight into the results of treating a patient in the years to come, instead of focusing primarily on the treatment of a tumor. In a number of years’ time, not a single treatment decision will be based exclusively on medical/ technical information.

References 1. Gestructureerd informatie verzamelen over de oudere oncologische patiënt. Oncologie Up to date; 2019. 2. Fried TR, Tinetti M, Agostini J, Iannone L, Towle V. Health outcome prioritization to elicit preferences of older persons with multiple health conditions. Patient Educ Couns. 2011;83:278–82. https://doi.org/10.1016/j.pec.2010.04.032. 3. Stegmann ME, Festen S, Brandenbarg D, Schuling J, Van Leeuwen BL, De Graeff P, Berendsen AJ. Using the Outcome Prioritization Tool (OPT) to assess the preferences of older patients in clinical decision-making: a review. Maturitas. 2019;128:49–52. https://doi.org/10.1016/j. maturitas.2019.07.022. 4. Festen S, Kok M, Hopstaken JS, Van der Wal-Huisman H, Van der Leest A, Reyners A, De Bock GH, De Graeff P, Van Leeuwen BL. How to incorporate geriatric assessment in clinical decision-making for older patients with cancer. An implementation study. J Geriatr Oncol. 2019;10(6):951–9. https://doi.org/10.1016/j.jgo.2019.04.006.

5

Personal Attention to the Patient in the Pituitary Tumor Health-Care Pathway Wouter van Furth and Nienke Biermasz

Abstract

Patients with a pituitary tumor are referred to the Centre of endocrine tumors/Schedelbasiscentrum LUMC from many parts of the Netherlands. A pituitary tumor has a major impact on patients’ lives. It is therefore not surprising that this center has been focusing on patient-reported outcomes (measurements of quality of life) since the 2000s. Based on the Value-Based Care concept, a new clinical pathway has recently been developed which involved patients. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Cancer care · Pituitary tumor · Clinical pathways · Endocrinology · Neurosurgery “You only know how important hormones are when you lose them,” “Years after my ‘recovery’ I’m still not the same as before,” “So many worries about tumor growth and lack of understanding at work and among acquaintances,” and “I take as many as twenty pills a day” are frequently heard statements from patients. Hormones are essential messengers that regulate important bodily functions such as metabolism, growth, reproduction, and the stress system. This is done in a very closely balanced way in conjunction with external influences. Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_5) contains supplementary material, which is available to authorized users. W. van Furth (*) · N. Biermasz Leiden University Medical Center, Leiden, The Netherlands e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_5

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This delicate balance is disturbed in patients with pituitary tumors. The patient either has too few or too many hormones. Pituitary diseases have an enormous impact on people’s physical and mental health as well as on social function. The consequences are often chronic and regularly affect young people with a good life expectancy. Pituitary tumors come in all shapes and sizes: from very small (practically invisible) to very large (from 4 to 8–10 cm). They may be limited to the pituitary gland or extend toward the base of the skull or the third ventricle. The optic nerves may be affected, leading to field of vision problems or even blindness. Pituitary tumors can produce too many hormones, such as growth hormones (acromegaly), stress hormones (Cushing’s disease), or mammary gland hormones (prolactinoma). Partial or total hormone failure can also occur due to pressure from the tumor. Treatment may consist of medication, surgery, and/or radiotherapy. Sometimes doing nothing is best. Neurosurgery is an important treatment option, but very small and invasive tumors as well as large tumors present their own challenges. Radiotherapy can be effective, but it is often at the expense of pituitary function. Thus, the many treatment options all have advantages and risks. Individual considerations are important in order to choose the best treatment together with the patient.

5.1

Outcomes

LUMC has a long tradition of treating pituitary tumors. The first pituitary surgery in the Netherlands was performed here. This was followed by an outcome study. All short- and long-term results have been tracked by a team of experts (Hans van Dulken, neurosurgeon, and Ferdinand Roelfsema, endocrinologist). In the 2000s, the conversion of biochemistry (measuring hormones) into patient-reported outcomes (measuring quality of life) was made. Awareness of the greatly reduced quality of life of this group of patients has been raised in important publications [1] and dissertations. This led to a follow-up plan, based on the need for: • Better PROMS [2] to properly measure the effects of a hormone disease and to identify the need for guidance. • Psychosocial interventions based on the needs of the patient group, called the PEP4all. Patients were given advice in groups on how to deal with the misunderstanding of and unfamiliarity with the rare disorder and the stress and fatigue, and how to manage the symptoms in their personal lives. In consultation with patients, it became clear that there was a great need to improve care, preferably in a high-volume center with a dedicated team—one that offers personalized guidance throughout the entire treatment process. Thanks to the previously published data, it became clear that this care must be focused on: • Personal guidance and identification of the treatment goals. • The very best intervention with the right timing and pretreatment aimed at remission without damage to the pituitary gland.

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• Optimal diagnostics and innovative techniques, e.g., nuclear scans and better MRIs, to propose the very best intervention. • Shared decision-making with experienced multidisciplinary treatment providers and the patient in order to achieve an optimally personalized treatment process. • Adequate aftercare in a regional collaboration. • International collaboration and organizing and participating in conferences as well as further training to discuss how to improve this care with experts. • Analysis of data to measure the quality of care and to better identify the relevant outcomes of different treatments for subgroups. The value-based care concept came at the right time. This perfectly matched the needs of the patients and the team. Based on this, we developed a new clinical pathway, with support from the LUMC’s value-based care teams.

5.2

Clinical Pathway for Value-Based Care

Patients with a pituitary tumor are referred to the Centre of endocrine tumors Leiden/Schedelbasiscentrum LUMC from many parts of the Netherlands. The team assesses all referrals, requests the necessary information and, as far as possible, sets up a plan of action for the first outpatient clinic appointment. Every week there are at least two combination clinics, where the endocrinologist and the neurosurgeon see the patients together. Fellows, assistants, and students also have a role in consultations, but each patient is always seen by a senior specialist. Each new patient has an appointment with the specialist nurse as well. The structure of the clinical pathway is fixed, but there is plenty of room for individual adjustments. These can be medical as well as a logistical in nature, such as in the case of a long travel distance. The electronic health record has its own layout, matching the clinical pathway. We utilize “registration at the point of care”, where we record data unambiguously and only once, enabling us to reuse it later on. This facilitates registrations of good quality. The data also form the basis for a dashboard, which provides an overview of the entire patient population. PROM and PREM questionnaires are digitally generated prior to the consultation and are directly visible in the EHR. In a bi-weekly multidisciplinary meeting, the team outlines treatment plans for individual patients. Planning and evaluation of the surgery program takes place in a weekly quality review, when medical specialists, nurses, assistants, students, researchers, and secretaries discuss scheduled surgeries, patients who have recently been operated on, and other urgent matters. This weekly meeting provides an opportunity to quickly anticipate new developments and to evaluate the care provided. They discuss what went well and what can be improved in order to run through the improvement cycle optimally.

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5.3

Rare and Complex

Setting up a clinical pathway for patients with these rare tumors, where each subtype is different, was a challenge. Ensuring continuity, expertise, and infrastructure requires a certain number of patients. This also applies to obtaining meaningful outcome measurements. Highly specialized surgical care is becoming increasingly centralized in the Netherlands. The new clinical pathway allows the team to cope with a larger patient flow. At the same time, the referrals and associated surgeries have increased to such an extent that this poses new challenges. The number of patients is still rising sharply: from more than 40 to over 120 surgeries per year in the past 5 years.

5.4

Consolidate and Anchor in the Existing Structure

The value-based clinical pathway with individual attention for each patient (Fig. 5.1) is in place. Referring physicians and patients appreciate the care and service provided. However, behind the scenes it takes a lot of effort to consolidate this care and maintain the same quality in the face of growing referral streams and abscence of dedicated funding. The biggest challenges now lie in the areas of governance, logistical capacity, sustainability, balanced multidisciplinary staffing, and training. The next step is to ensure governance in the structure of an integrated practice unit. This helps to optimize the planning of the team’s staffing, and also to be able to actually make value-­ based choices. Another challenge in improving the quality of care is difficulty to secure funding for innovations. Innovations are key for quality improvement and is therefore a focus of us (Box 5.1). Box 5.1 Innovation

Innovation is essential for improving the quality of care and optimizing care itself. A few examples of innovations. Through a ZonMw (Dutch health research funding agency) efficacy study, the national prolactinoma study that we initiated, we are investigating whether this common pituitary tumor can be better treated by surgery or drug therapy. Discussing the possibilities of a surgical intervention, as an alternative to the chronic use of medication, has been positively received by the patients organisation. With the help of a grant from the innovation fund of health insurers, we evaluated and introduced “the short admission protocol”. In this protocol, we safely reduce the admission time by discharging low-risk patients from the hospital after 1 or 2 days. This is followed by intensive post treatment surveillance to quickly identify any complications. The Radboud university medical center has since implemented the same protocol. A valuable diagnostic innovation is the 11C-Methionine PET-MRI, which can detect residual tumors in functional pituitary tumors. This is done together

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with the pituitary team from Cambridge (UK). Thanks to this research it is possible to better assess the success rates and risks of a repeat surgery on a complex tumor, such as in pituitary tumors causing Cushing’s disease and acromegaly. Soon the Center will start with an innovative surgical technique, in which we try to identify the pituitary posterior lobe using electrodes. The aim of this technique is to prevent the most common complication: loss of function in the pituitary posterior lobe and a shortage of the hormone vasopressin. Innovative education is CAPITAL, Care for Pituitary Adenoma Leiden, a formula we started 3 years ago. It is an annual, international, multidisciplinary expert workshop, where current best care practices are discussed by the experts.

5.5

Patient Experiences

Patients appreciate the accessibility of the staff members in the reworked clinical pathway. They can quickly contact them by telephone or e-mail. The secretary is well aware of the patient’s circumstances, which is valuable for scheduling the surgery. The specialist nurses are involved in both the outpatient and clinical process. Seeing a familiar face during admission reassures patients. Some patients find an “early” discharge from the hospital exciting, but the intensive aftercare ensures that they still experience it as safe. In this way, all links in the chain add value to a positive patient experience.

5.6

Results

The classical outcome measure for surgery on functional pituitary tumors is the percentage of patients with normalized hormonal overproduction. The disease is then in remission, the symptoms decrease. Because success depends on the size of the tumor, it is very difficult to compare results. The flowchart (Fig. 5.2) shows our outcomes for patients with Cushing’s disease after an initial surgical intervention. This shows that the results have been very stable over the years, with the transition from a microscopic surgical technique to endoscopic surgery not leading to a loss of quality. Thanks to a larger amount of surgeries we can interpret the center’s overall outcome data better, and the results have actually improved. In this set, 79% (95% CI: 74.3–83.8%) of the patients are in remission, which is 83% in microadenomas (95% CI: 76.8–90.0%) and 76% in macroadenomas (95% CI: 64.3–86.7%). This is comparable to other major centers around the world [3]. There are also other patient outcomes: of patients with a paid job after a pituitary tumor treatment, 41% were absent due to illness in the previous year [4], 95% were

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W. van Furth and N. Biermasz Patient experience “perception”

Long period of uncertainty

A diagnosis has been made at last: finally some clarity!

The initial diagnosis is made at the regional hospital.

Initial diagnosis of pituitary disease There is a diagnosis at last: why do I need to be examined further?

Known research data combined with new examination data together provide the best possible picture of the situation.

Intake at the endocrinologist and/or neurosurgeon

Diagnostic phase

It is good to be involved in the decision-making process

The option for an abbreviated hospitalization program for the treatment is discussed in the Multidisciplinary Meeting.

Multidisciplinary Meeting

The multidisciplinary team diagnoses the disease conclusively.

No surgery

Standard hospitalization program

During the new diagnostic process at LUMC, the patient is involved in all decisions.

Not possible

Uncertainty about policy because of all the different doctors

Probably possible Decide on the treatment plan together with the patient

Definitely

Abbreviated hospitalization program

A decision provides a little more certainty, and a good explanation is reassuring

Standard hospitalization program

Not possible

Depending on the course of the surgery, the course is assessed and what is best for the patient is examined.

Probably possible Stress before the surgery

Treatment Course of treatment

Definitely

Abbreviated hospitalization

Standard hospitalization program

After the second hospitalization day, the final decision is made about whether the patient is eligible for the abbreviated hospitalization program.

The results of the surgery provide greater certainty and a sense of relief.

Not possible

Definitely

Stay in the hospital for two days

It is nice to be able to go home quickly Abbreviated hospitalization

You will still feel very tired, but it is exciting to go home right away.

After the surgery, you may be very thirsty or have to go to the toilet very often, so it is important to monitor your fluid balance.

You are making positive progress, getting better at noticing symptoms, and experiencing fewer symptoms, but your recovery is still a difficult process.

The case manager will contact you if there are

In the event of severe symptoms or major abnormalities in your fluid balance or weight, please contact the case manager directly.

Fluid balance Weight Symptoms

If the case manager sees abnormalities in your data, they can adjust your medication accordingly.

After two weeks, it is no longer necessary to do a daily check, but the case manager continues to be involved intensively. You track your data in the app or by mail daily.

Fluid balance

Weight

Symptoms

Headache

Vomiting

Nausea

Fever

Contact with Case Manager

Recovery can sometimes be disappointing which can cause ups & downs Tracking data in the app on the website

Fluid balance, weight, and symptoms are checked daily for two weeks.

Final consultation

Fig. 5.1  Overview of the pituitary clinical pathway

Self-monitoring for two weeks at home

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37

134 patients with Cushing’s disease

Early remission 85%

Old microscopic technique (2007)

87 patients

47 patients

No remission 14%

Death 1%

Early remission 83%

No remission 17%

Relapse 20%

Late remission 65%

Relapse 19%

No remission 35%

Late remission 64%

No remission 36%

Post-treatment (repeat surgery, radiotherapy, medication, bilateral adrenalectomy, or combinations)

Fig. 5.2  Flowchart: Traditional presentation of “biochemical” surgical results and posttreatments for Cushing’s disease [3]

LBNQ-hypofyse totaal score

100

80

Acromegaly

Score

60

Prolactinoma 40

20

Baseline

5 days

6 weeks

6 months

time

Fig. 5.3  Perioperative patient-reported results per tumor type [11]. Higher scores indicate a higher disease burden. *Significant difference compared to baseline (within tumor type). ACRO acromegaly, LBNQ pituitary, Leiden Bother and Needs Questionnaire—Pituitary, PRL prolactinoma

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still being treated by the endocrinologist, and 11% visited the emergency room the previous year [5]. For research into the quality of life of patients with pituitary diseases, we have developed our own disease-specific PROM, which is used in addition to the usual questionnaires [1, 2, 6–10, 11]. Although the standard questionnaires for quality of life allow comparison between different patient groups, the results for the patient with a pituitary disease are not very informative. The Leiden Bother and Need Questionnaire does show clear differences between the different types of pituitary adenomas. Patients with Cushing’s and prolactinoma have the highest bother related to the consequences of the disease, and patients with Cushing’s alone do not significantly improve, whereas all other groups do (Fig. 5.3). Thanks to structural outcome measurements we are able to show the results of effectiveness, safety, and other outcomes for each year and period. This data helps to further improve care in a targeted way. We adjust the clinical pathway based on the outcome measurements and patient feedback. For example, fewer endocrine tests are performed postoperatively because we can rely on a single cortisol test. And we pay more attention to care for patients who are on the waiting list because that is what patients need. Better protocols for prioritization and planning have been created for health-care providers so that we can now conduct three pituitary gland surgeries in 1 day. We also provide standard psychosocial counseling for the patient, with feedback via PROMs in the consultation room. Finally, there is intensive contact with the ICT department in order to adapt the improved dashboard as well as possible to our needs.

References 1. Biermasz NR.  The burden of disease for pituitary patients. Best Pract Res Clin Endocrinol Metab. 2019;33(2):101309. https://doi.org/10.1016/j.beem.2019.101309. 2. Andela CD, Scharloo M, Ramondt S, et  al. The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary. Pituitary. 2016;19(3):293–302. https://doi.org/10.1007/s11102-­016-­0707-­4. 3. Broersen LHA, Biermasz NR, van Furth WR, et  al. Endoscopic vs. microscopic transsphenoidal surgery for Cushing’s disease: a systematic review and meta-analysis. Pituitary. 2018;21:524–34. https://doi.org/10.1007/s11102-­018-­0893-­3. 4. Lobatto DJ, Steffens ANV, Zamanipoor Najafabadi AH, et al. Work disability and its determinants in patients with pituitary tumor-related disease. Pituitary. 2018;21(6):593–604. https:// doi.org/10.1007/s11102-­018-­0913-­3. 5. Lobatto DJ, van den Hout WB, Zamanipoor Najafabadi AH, et al. Healthcare utilization and costs among patients with non-functioning pituitary adenomas. Endocrine. 2019;64:330–40. https://doi.org/10.1007/s12020-­019-­01847-­7. 6. Tiemensma J, Andela CD, Kaptein AA, et al. Psychological morbidity and impaired quality of life in patients with stable treatment for primary adrenal insufficiency: cross-sectional study and review of the literature. Eur J Endocrinol. 2014;171(2):171–82. https://doi.org/10.1530/ EJE-­14-­0023. 7. Andela CD, Lobatto DJ, Pereira AM, van Furth WR, Biermasz NR.  How non-functioning pituitary adenomas can affect health-related quality of life: a conceptual model and literature review. Pituitary. 2018;21:208. https://doi.org/10.1007/s11102-­017-­0860-­4.

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8. Andela CD, Tiemensma J, Kaptein AA, et al. The partner’s perspective of the impact of pituitary disease: looking beyond the patient. J Health Psychol. 2019;24(12):1687–97. https://doi. org/10.1177/1359105317695427. 9. Andela CD, van Haalen FM, Ragnarsson O, et  al. Cushing’s syndrome causes irreversible effects on the human brain: a systematic review of structural and functional magnetic resonance imaging studies. Eur J Endocrinol. 2015;173(1):R1–R14. https://doi.org/10.1530/ EJE-­14-­1101. 10. Broersen LHA, Andela CD, Dekkers OM, Pereira AM, Biermasz NR. Improvement but no normalization of quality of life and cognitive functioning after treatment for Cushing’s syndrome. J Clin Endocrinol Metab. 2019;104:5325–37. https://doi.org/10.1210/jc.2019-­01054. 11. Lobatto DJ, Najafabadi AHZ, de Vries F, et al. Toward Value Based Health Care in pituitary surgery: application of a comprehensive outcome set in perioperative care. Eur J Endocrinol. 2019;181:375–87.

6

Personalized Health Care for Orofacial Cleft Patients Chantal van der Horst

Abstract

The orofacial cleft, a congenital cleft of the upper lip, jaw, and/or palate, is a serious condition for children and parents. Through practical experience and new insights, the multidisciplinary orofacial cleft teams at six specialized centers discovered how much this condition requires personalized care. For example, the treatment wishes of parents and children/young people may be different. Even patients with a similar type of orofacial cleft may experience the effects in a completely different way. Years of consulting with physicians may also result in treatment fatigue in young patients. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Orofacial cleft · Plastic surgery · Shared decision-making · Patient-reported outcomes There is a film about a child being operated on to improve her appearance. The film portrays the experience of the child and parents regarding the surgery. As a viewer, I initially thought the surgery was what the child wanted. However, in the film, at the sight of her child in the recovery room, the mother bursts into tears, to which the child says: “Mom, don’t cry, I did it for you!” This was the reason for me to involve children in the consultation room more when making the decision to have surgery. Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_6) contains supplementary material, which is available to authorized users. C. van der Horst (*) Plastic Surgery, Amsterdam UMC, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_6

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C. van der Horst

This can prevent children from having unrealistic expectations about the outcome of the procedure. There are other examples that have made us reconsider the usual approach. A 19-year-old young adult living independently with a job receives a call for the final consultation with the orofacial cleft team. She last saw the team when she was 15 years old. Her mother offers to join her, but she does not think that is necessary anymore. She is now an adult and completely independent. When she enters the room, the team’s first question is: “Now, have you decided whether or not you want that big jaw operation?” Apart from the fact that this would be a final discussion at the end of her long treatment process, she is unaware of the purpose and content of the consultation. After this initial question she is confused, and the rest of the consultation is lost on her. A 15-year-old comes to the multidisciplinary consultation hour. She is happy with the current situation. Suddenly, the plastic surgeon asks her if she wants to have further work done on her lip. Later she asks: “What did he mean by that, is there something to improve and if so, what? And does it need to be done now?” These and similar examples have led to better information, the creation of health-­ care pathways and decision tools, the improvement of written and oral information, the use of patient-reported outcome measures (PROMs), and the commitment to a consultation where the patient can make their own decision, with or without additional information from the physician.

6.1

Work Method of Orofacial Cleft Teams in Practice

When a child is born with a cleft lip, jaw, and/or palate, the parents are usually aware of this because the obstetrician can notice this disorder as early as the 20-week ultrasound. Parents are then referred to prenatal orofacial cleft centers where further genetic testing is conducted if necessary. The parents are extensively informed about what this condition means for the child and the parents. Of course, the diagnosis of an orofacial cleft in the unborn child comes as a shock. Through good education and the time to adjust to the diagnosis, the birth of their child is often a joyful experience for parents. They are well prepared for what awaits them. However, this does not apply to parents of children with an isolated cleft palate. Sometimes the cleft can be seen during the 20-week ultrasound, but a cleft palate is only noticed after birth, especially when feeding is not going well (due to the palate cleft the child has difficulty forming a vacuum seal). This is often very distressing for the parents. They were not prepared for this and needed time and space to accept this diagnosis. The treatment process for a child with a cleft lip/jaw/palate ranges from 0 to 18/22 years. This process includes various operations: lip and palate closure in the first year of life, speech therapy to improve speech from 2½ years of age, the placement of tubes in the ears (grommets) to improve hearing (if necessary), speech-­ enhancing operations (if necessary), and the placement of bone in the jaw at the age of 10–12  years. To improve speech, guidance (potentially long term) from a

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specialized speech therapist is required. An orthodontist treats the position of the teeth (also potentially long term). The surgical procedures affect the growth of the jaw and the shape of the nose through scarring. During puberty and after growth of the upper jaw, secondary corrections can be made, such as rhinoplasty and osteotomy of the upper and/or lower jaw. Many specializations are involved in the care and supervision: nursing specialist, plastic surgeon, ENT physician, pediatrician, geneticist, speech therapist, orthodontist, oral surgeon, social worker, and psychologist. The aim is to have two available health-care providers in each field, with at least one of them specializing in orofacial cleft care so that the care can be continued. Patients from 0 to 22 years of age are monitored according to a fixed schedule. The care is multidisciplinary and consultation hours are organized as a “carousel” or with team consultations. In the case of a carousel consultation hour, the parents and their child meet each specialist separately or in groups of a few specialists (e.g., plastic surgeon and ENT physician together and orthodontist and oral surgeon together). Some teams discuss the treatment proposal with the patient after each consultation. Others will contact the patient by telephone the next day. The speech therapist that was added to the team works with speech therapists in the region that are specially trained in orofacial clefts, while the supervision remains in the hands of the center of expertise. The same sometimes happens with orthodontic care and, at an earlier stage, with pediatric care.

6.2

Value-Based Care

The evaluation of care is an ongoing process. The concept of “value-based care” can help here. In value-based care, we strive for the best outcomes for the patient at the lowest possible cost. This concept is therefore not only based on the process (has the right method been applied?), but above all on what the care provides to the patient. This applies perfectly to an anomaly such as orofacial cleft. Value-based care is made possible by using an outcome set with clinical and patient-reported outcomes (PROMs) supplemented by data on initial patient conditions and the applied treatment. In order to achieve uniform and comparable outcomes, ICHOM (International Consortium for Health Outcome Measurement) has set up project groups with representatives from all over the world to develop these types of sets for each clinical case. The outcome set for orofacial clefts was one of the first to be compiled by representatives of pediatric clinics and patients from around the world [1]. The set consists of both clinical outcomes and complications from the domains: body weight, appearance, eating and drinking, oral health, speech and communication, and psychosocial functioning. Various centers around the world, including Erasmus MC, have been measuring and using this set for some time in outpatient consultations for this patient group. Within the Netherlands Federation of University Medical Centres (NFU), a partnership has been formed between the six cleft centers in the Netherlands. The aim

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is to apply the same ICHOM orofacial cleft outcomes set: measuring, discussing with the individual patient, aggregation at the center level, eventually bringing the data together for comparison (benchmarking), and, above all, learning from each other. The data is brought together at Dutch Hospital Data (DHD) organization and made available to health-care providers through a dashboard, which will also replace the existing quality registration of the Nederlandse Vereniging Schisis en Craniofaciale afwijkingen (Dutch association for orofacial cleft and craniofacial disorders—NVSCA). The intention is that in time this information will also become available to patients for review.

6.3

Innovations in Orofacial Cleft Health Care

As Dutch orofacial cleft centers, we have redesigned and personalized this specialized care on several fronts. • Use of Patient-Reported Outcomes (PROMs) at set ages. The questionnaire is sent online and completed by the child, with or without assistance from their parents. Before the patient enters the consultation room, the health-care provider has reviewed these outcomes and can respond to identified bottlenecks and specific questions from the patient. • The development of Shared Decision-Making [2] with representatives from all national orofacial cleft centers and the patient organization Schisis Nederland (orofacial cleft Netherlands). • Improving information for the patient so that the patient can make a well-­ informed decision, together with the health-care provider, about whether or not to undergo surgery.

6.3.1 The Use of PROMs First and foremost, we want to know the situation of the individual patient and their questions in advance. We used the questionnaire to do this, merging the ICHOM questions with the questions about quality of life. One to three days before the consultation, we send the questionnaires to the patient and/or their parents via the internet. Patients who are at least 8 years old answer the questions themselves or together with their parents. The parents complete the questionnaires alone for patients younger than 8 years old. The results will then be discussed during the consultation. Unfortunately, not all parents and children complete the questionnaires. This also requires digital skills. Sometimes additional support and training is required.

6.3.2 Shared Decision-Making in the Consultation Room Good information is an important basis for shared decision-making. We try to inform the patient and parents about treatment options and their proposed schedule

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in such a way that they are able to come to a decision together with their physician. We provide this information on the websites via brochures, frequently asked questions, and decision tools. This development still requires a lot of attention. A section called “How to prepare for surgery” should not only be implemented for the first consultation with a newborn, but should also be available for every consultation. The information on the websites of the Dutch orofacial cleft teams is mostly background information on orofacial clefts and the situation immediately after birth. The orofacial cleft team Noord/UMCG clearly shows what goals in speech and dental development look like for certain age groups (see Fig. 6.1). This is an example of good information for parents and child. When it comes to patient-oriented information, we are clearly still in the development phase. Health-care providers are trained in the conversational technique of shared decision-­making, including checking whether the patient has understood the information. The patient is encouraged to ask the “three good questions” by actively offering them as preparation for the consultation. Health-care providers often think that they let the patient decide together with them, but research shows that patients often experience this differently. Shared decision-­making is also important when different treatment proposals lead to the Orofacial Cleft and Dental Development Disease, research, and treatment

If your child has an orofacial cleft, this can affect your child's dental development. Dental development consists of three phases:

Orofacial cleft Registering Care process 0 to 2 years 2 to 5 years

• Primary teeth • Loss of primary teeth/eruption of permanent teeth • Permanent teeth Loss of primary teeth/eruption of permanent teeth

Speech

This is the phase in which both primary and permanent teeth are present. Most children

The teeth

begin this process around their sixth birthday.

Palatal expansion 5 to 18 years

There is no standard time frame or order, especially in the area around the cleft. Sometimes permanent teeth will start to develop early, sometimes later. If any of the following occur, they must be addressed as soon as possible:

Heredity Orofacial cleft and hearing Orofacial cleft team Brochures Information evenings for parents Film orofacial cleft team UMCG Outpatient clinics and centers Outpatient clinics – maps Route to UMCG Departments Rare disease expertise centers

•

The upper incisors grow in such a way that, when the child closes their mouth, these teeth are behind the lower incisors.

• The molars and canines in the upper jaw develop so much that they bite onto the inside of the corresponding lower teeth. In these cases, your child will be given braces around the age of 11 or 12 to improve the position of the teeth. The orthodontist of the orofacial cleft team will assess if and when your child requires orthodontic treatment. There are no fixed rules for this and it is determined on the individual situation of the child. Before the tenth year of life it is usually too early to begin treatment with braces. Improving the position of the primary teeth usually does not improve the position of the permanent teeth. For this reason, we often wait until the majority of the permanent teeth have come in, so that it is clear which abnormalities your child has.

Surgical day treatment

Fig. 6.1  Stages in dental development by age (website for parents and children, Orofacial cleft team UMCG)

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C. van der Horst

same result. For example, it is known that scar maturation can take years and that waiting for this spontaneous improvement of the scar produces an equally good result as would be achieved through repeated surgical corrections. This kind of explanation gives patients and/or parents the freedom to decide to “wait and see.” Although shared decision-making in the initial stages can take more time, we expect that it will eventually save time because the patient is more satisfied and will support the treatment.

6.4

Results

Studies in adolescents show that this group wants to be more involved in making a treatment decision as their age increases. Parents more often than children indicate that the child is “too young” to decide for themselves. Children feel that they are not always being listened to and sometimes feel forced into treatment, both by their parents and by their health-care provider. It is important for children to know that the health-care provider supports the child in making their own decision. Patients also indicate that they are insufficiently aware of the options available for improving their situation and of the results that can be achieved with certain operations as well as at what price. Good information prior to the consultation ensures that patients can ask relevant questions based on their situation. Social and psychological problems can be better diagnosed by using the answers to the questionnaire, which can be used to make individual contact if desired by a social worker and/or psychologist. A proposal for treatment is postponed at the request of the patient. Even though a scar correction of the lip is a relatively minor procedure, a patient should know that the scar can be red and therefore noticeable in the first few months after the procedure! This can be a reason for an adolescent not to go ahead with this surgery for the time being. When the decision to operate is made together with the patient, this leads to higher satisfaction with the treatment result, even if the result is not what was expected. Kapp-Simon [3] shows in a large study that condition severity, age, or sex are not associated with satisfaction with the surgical outcome. There was also no association between depression, self-esteem, or the negative effects of having an orofacial cleft with satisfaction regarding past surgeries. However, young people who were actively involved in the treatment decision did show greater satisfaction with the treatment result.

6.5

Patient Experiences

Patients are positive about the initial changes. According to them, filling out questionnaires leads to a more complete consultation in which their important points of attention receive the necessary attention. Attention to psychosocial issues is also

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considered important. Good preparation with insight into the purpose of the consultation and asking the right questions increase the patient’s knowledge and insight. The better informed the patient and parents are, the greater the satisfaction with the treatment.

6.6

Quality of Life

The main goal of treating children with a cleft lip/jaw/palate in puberty is to increase their quality of life and work on their resilience. Treatment providers propose surgical corrections to meet the expressed or unspoken desire for an improvement in appearance. Only by involving patients in the treatment do we know what their individual wishes are and what they find important in their lives at that moment. Involving patients in the decision to undergo surgery therefore leads to greater satisfaction with the operation and in turn to a higher quality of life. The structured patient feedback via PROMs has also led to changes in the organization of outpatient consultations at some centers, where the presence of a specific nursing specialist is crucial.

References 1. Allori AC, Kelley T, Meara JG, Albert A, Bonanthaya K, Chapman K, Cunningham M, Daskalogiannakis J, de Gier H, Heggie AA, Hernandez C, Jackson O, Jones Y, Kangesu L, Koudstaal MJ, Kuchhal R, Lohmander A, Long RE Jr, Magee L, Monson L, Rose E, Sitzman TJ, Taylor JA, Thorburn G, van Eeden S, Williams C, Wirthlin JO, Wong KW. A standard set of outcome measures for the comprehensive appraisal of cleft care. Cleft Palate Craniofac J. 2017;54(5):540–54. https://doi.org/10.1597/15-­292. 2. Santosa KB, Keane AM, Politi M, Snyder-Warwick AK, Santosa KB, et al. Facial animation surgery for long-standing facial palsy: opportunities for shared decision making. JAMA Facial Plast Surg. 2019;21(1):3–4. https://doi.org/10.1001/jamafacial.2018.0930. 3. Kapp-Simon KA, Edwards T, Ruta C, Bellucci CC, Aspirnall CL, Strauss RP, Topolski TD, Rumsey NJ, Patrick DL, Kapp-Simon KA. Shared surgical decision making and youth resilience correlates of satisfaction with clinical outcomes. J Craniofac Surg. 2015;26(5):1574–80. https://doi.org/10.1097/SCS.0000000000001892.

7

Multidisciplinary Improvements in the Nephrology Outpatient Clinic Fenna van Breda, Marije van der Steen, and Martine de Bruijne

Abstract

Since 2017, Amsterdam UMC’s Nephrology outpatient clinic has been working on value-driven care for chronic kidney failure. The aim is to ensure that the care better meets the preferences and needs of the patient. On the one hand, it would be done by allowing the patient to participate in the discussion about improvements in care, while also using outcomes and shared decision-making in the consultation room. By removing existing barriers between departments, we are improving care at the Nephrology outpatient clinic together with our colleagues and the patient. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Nephrology · Shared decision-making · Patient journey · Patient-reported outcomes

F. van Breda (*) Department of Nephrology, Amsterdam University Medical Center, Amsterdam, The Netherlands e-mail: [email protected] M. van der Steen Department of Strategy and Innovation, Amsterdam University Medical Center, Amsterdam, The Netherlands e-mail: [email protected] M. de Bruijne Amsterdam UMC, Vrije Universiteit, Amsterdam, The Netherlands Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_7

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When we were asked in 2017 to apply value-driven care to the nephrology outpatient clinic, our usual enthusiasm was quickly tempered by somewhat sarcastic remarks such as “Another fad,” “Would it not be better to put our energy into direct patient care?”, and “Is this the same as Lean?” It is fair to say that we were not well informed about value-driven care until we started reading about it. By reading different reports and articles [1–4], it became clear that this method could be very interesting for the patients and the team at the Nephrology outpatient clinic. Our ambition as physicians has always been to improve care, not only for patients but also together with them. However, due to the usual workload, there was often too little time to discuss improving care with the team and patients. This invitation for health-care innovation offered a great opportunity to devote time and attention to this, especially now that the patient would really be involved in this improvement. We had to seize this opportunity. What started out as a project has slowly grown into a valuable addition to our daily work. The support and enthusiasm within the department is growing, and the team spirit is great. It is a privilege to be able to free up time to think about care improvement on another level. We are glad that chronic kidney damage was a testing ground for value-driven care.

7.1

I n Practice: Multidisciplinary Improvements Involving the Patient

The Nephrology outpatient clinic is organized in such a way that patients can talk to health-care providers from different disciplines in one extended visit. At the Nephrology outpatient clinic, we treat patients with kidney function of 20% or lower and prepare them for renal replacement therapy. They will have consultations with the nurses about all options available to them, such as hemodialysis, peritoneal dialysis, kidney transplant, or conservative therapy. In addition, a lot of attention is paid to slowing down kidney function deterioration and preventing metabolic complications of impaired kidney function. This is done in several ways, including by keeping the blood pressure and abnormalities in the blood as a result of the kidney disease up to standard levels with medication. A balanced diet and the support of a dietician can also counteract progression of the disease. Kidney diseases have a considerable impact on the personal life of patients. A medical social worker can help them with this. For elderly, often vulnerable patients, we ask that internist geriatrics look at the possibilities and impossibilities for dialysis and polypharmacy.

7.1.1 Value Team We began by putting together a “value team” with health-care professionals who were all, to a greater or lesser extent, involved in the Nephrology outpatient clinic. These are nephrologists, nurses, dieticians, social workers, receptionists, vascular surgeons, an obstetrician, electronic health record staff members, the dialysis team

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leader, and a nursing home physician. Two patients were members of the value team as well. They had gone through the entire process: from being referred to the Nephrology outpatient clinic to receiving information and choosing a treatment plan. Starting in December 2017, this value team met every 3 weeks to outline the process a patient goes through.

7.1.2 Patient Journey Throughout several sessions, the value team analyzed what impact chronic kidney damage has on patients’ lives [5]. How do they experience the care in the outpatient clinic and what do they consider the most important points for improvement? A focus group of eight patients provided a lot of useful information. They provided a new perspective on what patients encounter and what worries them in daily life. The focus group also provided input for an outcome set with items that are important for patients with chronic kidney damage and for the improvement agenda. Outcomes give a value team insight into the effects of the treatment and guidance. Patient-reported outcomes (PROMs) on function in daily life and quality of life were particularly informative. Patients complete these PROMs prior to the consultation at the outpatient clinic. If health-care providers know what patients want to talk about prior to the consultation, they can make it much more effective [6]. By being more closely connected to the patient’s experience, it also becomes more natural to make decisions together with the patient. The patient’s situation and what is of “value” to them is the foundation, not the treatment. A lot of attention has been paid to creating a dashboard that provides the patient with an overview of their answers to the questionnaires in the consultation room. The health-care provider can also discuss the development over time and see what is needed to improve important problems. The questionnaires were in line with the international ICHOM Outcome Set for Chronic Kidney Disease [7]. This was a conscious choice because this enables future comparison of outcomes among different hospitals to learn from each other. The clinical outcomes are also partly based on this ICHOM set, supplemented with some parameters that the team considers important. We can also provide insight into the clinical outcomes through an interactive dashboard. It is interesting to see how some outcomes are different across the Nephrology outpatient clinics. This makes us curious to know the determinants of optimal patient value.

7.1.3 Improvement Agenda Based on input from patients, we have formulated our vision for the Nephrology outpatient clinic. This formed the basis for our “improvement agenda”: a list of proposals to make care more valuable. A smaller team then prioritized items on the agenda for further development and prepared how to do this. This smaller team meets monthly and has already implemented a significant part of the improvement

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agenda, such as hiring a nursing specialist, improving information material, the use of PROMs, and shared decision-making in the consultation room. The guiding principle for all improvement actions is that we add value for our patients.

7.2

Experiences of Patients and Health-Care Providers

Patient involvement is an important element of value-driven care. The input of the focus group with eight patients was essential as was the valuable contribution of two patients who participated in the team sessions. They kept the value team constantly on their toes when developing ideas and proposals. This helped us to remain focused on what matters to the patient. Experience shows that as a health-care provider you sometimes slowly drift away from this. The patients showed us that care outcomes extend beyond medical results. The involvement of patients also changes the tone of the conversation. Health-care providers are less likely to say “my patients think that …” because they can now ask the patient, who is with them at the table, directly and hear their opinion. Consistently involving patients is also a challenge. The experiences of patients (PREM) are measured at the hospital. The results also serve as input for improvements. In order to ensure continuous input from patients, one of the patients from the value team was hired as a staff advisor in the Nephrology department. In practice this turned out to be more difficult than expected. What was his function exactly? Who could he approach for guidance? Staff could no longer discuss Patients during coffee breaks, because this was felt to be too confrontational for the new colleague. Some things have improved (like the website), but the experiment did not deliver what we hoped for. With a detailed plan and good guidance, this may work next time. Patients like to work with us to come up with ideas about improvements in health care, but due to the complex organization of health care itself, changes cannot be made instantly. Sometimes there are several interests at stake, and it can take a long time before a seemingly simple improvement is implemented. But by sharing successes, large or small, with the team and patients, the enthusiasm for these initiatives remains strong.

7.3

Results

A lot was achieved. Three results stand out: collaboration has improved, the care process is more efficient and patient-focused, and the discussion in the consultation room has changed.

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7.3.1 A Strong Team By thinking about points for improvement as a value team, we were able to better understand each other’s “struggles” and constructively look for the right solutions together. People responsible for the management and layout of the electronic health record (EHR) within Amsterdam UMC explained why it is so difficult to include certain “orders” in the EHR. From discussions with the surgeons, it became clear where some of the referrals went wrong. Through more mutual coordination and taking joint responsibility for the care, loyalty within the team has grown. The team still benefits daily from these intensive sessions. It makes working in daily practice so much more pleasant, and the improved communication is in itself valuable for the patient.

7.3.2 A Streamlined Health-Care Pathway The organization of care and the process itself have become more patient-oriented. For example, a nurse specialist has been hired so that the continuity of care is better guaranteed. A few flawed processes have been optimized so that patients are not required to return as often between consultations and so that the information material is up to date. The structure of the multidisciplinary consultation has been modified; patient’s treatment plans are now structurally discussed on a multidisciplinary basis. In addition, multidisciplinary consultation was conducted with dedicated surgeons who perform the shunt and PD catheter care for the kidney patients.

7.3.3 G  ood Conversations Because of PROMs and Shared Decision-Making The implementation of PROMs in the consultation room means that outcomes that are important to patients form the starting point for shared decision-making on the most appropriate treatment. We send questionnaires (PROMs) to patients via the electronic health record and discuss the results in the consultation room. This requires a different way of working, which takes a bit more time in the beginning. Because the discussion is more focused and the patient “supports” the choice of treatment, we can save time later in the process. Remarkably, the use of PROMs highlights problems that were previously neglected. For example, sexual dysfunction has revealed itself to be a bigger problem than expected and often remained undiscussed in the past. The nursing specialist has developed a program to make this issue more discussable. In some cases, a referral to a urologist or sexologist is recommended.

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Ambitions for the Future

The motivation of patients to complete questionnaires depends on the feedback of the outcomes. However, questionnaires can sometimes also be unnecessarily long. Not all questions are relevant, particularly when people are still in relatively good health. Our ambition is to start working with computerized adaptive testing (CAT). CAT ensures that only questions that are relevant to the patient are asked. For that reason, a link was made with the PROMIS CAT database and our EHR. The interactive dashboard in which clinical outcomes are made available is carefully shared with fellow nephrologists. The plan is to focus on clinical outcomes that are relevant to the patient, such as the number of complications. Reducing complications adds value for patients and at the same time reduces health-care costs. The aim is to also compare clinical outcomes between different hospitals and dialysis clinics. Transparency not only allows us to find out why one clinical outcome is more common in one hospital than another but also allows us to learn from each other and improve. Our improvement agenda is far from exhausted, and the value team’s long list of proposals for innovation is long. The improvement team is always looking for the time and room to take initiatives. The involvement of the patient remains necessary. By continuing to test our improvement plans with the group, we can add value to the care of the Nephrology outpatient clinic.

References 1. Porter ME, Lee TH.  From volume to value in health care: the work begins. JAMA. 2016; 316(10):1047–8. 2. Porter ME. What is the value in healthcare? N Engl J Med. 2010;363(26):2477–81. 3. Zorginstituut. Meer patiëntregie door meer uitkomstinformatie in 2022. Diemen: Zorginstituut; 2018. 4. NFU.  Bouwstenen voor werken aan waardegedreven zorg. https://nfukwaliteit.nl/pdf/ Bouwstenen_voor_werken_aan_waardegedreven_zorg.pfd. 5. Ovretveit J, Zubkoff I, Nelson EC, Frampton S, Knudsen L, Zimlichman E. Using patient-reported outcome measurement to improve patient care. Int J Qual Health Care. 2017;29(6):874–9. 6. Damman OC, Jani A, de Jong BA, Becker A, Metz MJ, de Bruijne MC, Timmermans DR, Cornel MC, Ubbink DT, van der Steen M, Gray M, van El C. The use of PROMs and shared decision-making in medical encounters with patients: an opportunity to deliver value-based health care to patients. J Eval Clin Pract. 2020;26(2):524–40. 7. Verberne W, Das-Gupta Z, Allegretti A.  Development of an international standard set of value-based outcome measurement for patients with chronic kidney disease: a report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. Am J Kidney Dis. 2018;73(3):372–84.

8

Healthcare Monitor Supports Value-­ Based Health Care for Head and Neck Cancer Patients Marinella Offerman, Emilie Dronkers, and Rob Baatenburg de Jong

Abstract

Monitoring patients with Head and Neck Cancer (HNC) occurs on an outpatient basis for up to 5  years after their treatment. During these often-short contact moments with their physician, efficiently communicating information is a prerequisite for appropriate care. The department of ENT/Head and Neck Surgery of Erasmus MC developed Healthcare Monitor to monitor general health status and quality of life of patients during the entire outpatient care process. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Head and neck cancer · Patient-reported outcome measures · Quality of life · Shared decision-­ making · Dashboards

Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_8) contains supplementary material, which is available to authorized users.

M. Offerman (*) · E. Dronkers · R. Baatenburg de Jong Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus University Medical Center Cancer Institute, Rotterdam, The Netherlands e-mail: [email protected]; [email protected], [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_8

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There are two parties in the consultation room, and each plays their role: the physician as the expert of the disease and the patient as the expert on his1 own life. The physician focuses on identifying, questioning, and following up on symptoms, while the patient shares his symptoms and concerns and how these can influence his daily life. However, several factors can hamper an efficient transfer of information. First of all, the standard consultation usually takes place within a short timeframe of 10 min on average. It is unrealistic to think that all patients can share their health status briefly and to the point within this period. Patients often feel distressed during the follow-up consultation, causing them to forget to ask questions. Moreover, it is expected for patients to more and more actively participate in discussion with the physician to enable shared decision-making during the process of illness, treatment, and aftercare. However, not every patient can or wants to take this proactive role. On the other hand, the physician must have excellent communication skills to identify and monitor symptoms, which are both medically important and of value to the patient. Remarkably, these two are not always the same. These abovementioned factors may lead to physical impairments, and psychosocial problems may go undetected and patients remaining at risk of being deprived of the most appropriate care. To support the process of efficient and effective collection and exchange of information in the consultation room, we developed Healthcare Monitor (Zorgmonitor) in 2013. The Healthcare Monitor is an open source data capture tool (GemsTracker/ LimeSurvey), an electronic way to measure Patient-Reported Outcome Measures (PROMs). Our method of working with the Healthcare Monitor enables us to monitor the health status and quality of life of patients with head and neck cancer throughout the entire outpatient care process, including individual feedback using a dashboard in the consultation room.

8.1

Significant Impact on Well-Being

Head and neck cancer includes tumors located above the collarbone, except for brain and spinal cord tumors. Both the disease and its treatment can affect vital functions such as speaking, breathing, and swallowing and can lead to visible disfigurement. The disease and its treatment have a significant impact on psychosocial well-being [1]. Our research with focus groups showed that part of our patients desire personalized information about their expected quality of life after their cancer treatment [2]. Electronic reporting of patient-reported outcomes (ePROs) can support the exchange of information between patient and physician. Previous studies from our research group have shown that questionnaires to detect underexposed problems, such as psychosocial issues, can be used at the outpatient clinic [3]. Furthermore, the majority of HNC patients prefer to fill in the PROMs at the outpatient clinic [4]. 1  For readability, we use “him” or “his” when we talk about the patient; however, both male and female patients are meant.

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Patients fill in the questionnaires either at home via e-mail or at the outpatient clinic if necessary with the aid of a volunteer. Results are real-time available and displayed via a dashboard that can be used in the consultation room.

The physician and the team discuss the results with their patients. Individual patient results can be compared with the results of the previous consultation or with results from patients with comparable disease and treatment.

Fig. 8.1  Healthcare Monitor method of working in pictograms

Completion of the PROMs helps patients to describe their problems as best they can in the consultation room. The ePROs we use are internationally validated questionnaires on disease-­ specific, physical, and psychosocial aspects. Patients complete the questionnaires before the consultation, from their first visit to the final consultation (5 years after treatment). This can be done at home via the internet, or at the outpatient clinic, if necessary, with the aid of a volunteer. Assistance from a volunteer at the outpatient clinic enables people with a low level of literacy and people who have difficulty filling in digital documents to participate. The development of a dashboard has occurred to provide a clear overview of the real-time processed results. The dashboard allows the physician to already have an insight into the patient’s condition before he enters the consultation room (see Fig. 8.1).

8.2

Added Value in Clinical Practice

In practice, the use of the Healthcare Monitor is of added value for both the quality of care and patient empowerment, while it can also contribute to more efficient care.

8.2.1 Increased Quality of Care The Healthcare Monitor including the results displayed in a dashboard serves as a guide during doctor–patient encounters in the consultation room. This way of working results in more Value-Based Health care, i.e., the care is both based on outcomes that matter most to the patient and on the symptoms that mostly affect them. It helps the physician to provide personalized or the most appropriate care; neither too much nor too little. Using the Healthcare Monitor dashboard in the consultation room enables health-care professionals to see what is going on at a glance (see Fig.  8.2). The

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M. Offerman et al. Dashboard HH oncologie

Group

Bell

Domain

Comparison

Total score Functional EAT10 Dry mouth Sticky saliva

6 months

9

12

Functional

15

19

Physical

31

29

Total score

55

60

I think that others do not understand the problems with my voice Almost never Coughing Ill Use of pain killers

1 year

Emotional

Almost never

It annoys me when I’m asked to repeat something

Never

I feel frustrated when I’m asked to repeat something

Never

I am embarrassed because of the problems with my voice

Never

Never

I am anxious when I speak with others because of my voice

Almost never

Almost never

Never Never

Physical Use of food supplements Use of tube feeding Weight loss Problems with teeth Opening mouth wide

I get the impression that people are annoyed by my voice

Almost never

Almost never

I speak less often with my friends, neighbours and family because of my voice

Never

Almost never

The problems with my voice cause loss of income

Always

Never

I tend to avoid groups of people because of my voice

Never

Never

I try to change my voice to sound different

Sometimes

Never

Difficulty with eating as a social activity Difficulty with social contacts Psychosocial

Decreased sex drive Anxiety

Fig. 8.2  The Healthcare Monitor dashboard that is used in the consultation room is developed together with professional users by Tim Grevelink, Egge van der Poel, and Marinella Offerman

Healthcare Monitor also provides a holistic view: not only are the physical and functional symptoms examined. In addition, the consequences of illness and treatment on a psychosocial level and quality of life, in general, are shown. By recognizing and detecting symptoms early, with the help of the dashboard in the consultation room, the physician can immediately initiate the best care or, if necessary, refer patients to other health-care professionals. According to the interviews with patients, the quality of interaction between both the physician and the patient improves because both parties are better prepared for their encounter (see Fig. 8.4).

8.2.2 Strengthening the Position of the Patient In addition to more personalized care, the Healthcare Monitor enables shared decision-making within the consultation room. Through targeted information exchange using the dashboard, physician and patient become more active partners in communication. Patients are better involved in their care process. Answering the Healthcare Monitor ePROs and discussing the results with the help of the dashboard assist this process. This method of working also adds value to the involvement of patients with inadequate health literacy. Figures from the Nivel show that 29% of the adult Dutch population has insufficient or limited health literacy and has difficulty communicating with health-care professionals [5].

8.2.3 Future-Proof Health Care The Healthcare Monitor and the use of patient outcomes in the consultation room offer opportunities in making care, in general, more future-proof. A thorough yet quick review of patient outcomes enables the consultation time to be used more efficiently. The dashboards’ real-time processed results immediately provide a clear

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overview of the patient’s state of health, and deviating values in their functioning. Using these patient outcome data allows the conversation to be more focused, which usually saves time. In addition, based upon symptoms and wishes of the patients, the most suitable health-care professional can be deployed. Based on the credo “let the best man do the job,” this may also be a nurse, speech therapist, dietician, or psychologist. Together with all health-care professionals, “expert cut-off values” have been created so that the physician can directly refer patients to the right health-care professional for specific outcomes. For the future, we see a further focus on personalized care. With the help of the Healthcare Monitor, care can be provided in a more focused and alleviating way. This benefits both the patient and health care in general. Currently, patients have follow-up consultations with their physician at set times during the 5 years following their treatment, yet personalized care would be more effective and efficient. This is even truer for patients who live farther away and for whom the journey to the outpatient clinic can be difficult at times. Using the Healthcare Monitor outcome information, we can determine the optimal individual approach of the follow-up consultation, in terms of timing, number of consultations, and working method. Personal visits to the outpatient clinic, for example, can be partially replaced by electronic or telephone consultations. By closely monitoring complaints and the insights from the dashboards, we can, above all, better determine which care benefits the individual patient most. The dashboard signals can give instructions to the most suitable health-care professional. In addition, the patient always has the opportunity to be in contact with their primary physician.

8.3

Research Among Patients and Health-Care Providers

We examined the effects of the use of Healthcare Monitor during the different phases of implementation. The first assessments were mainly exploratory [6]. The effects focused on the following: • A description of the Healthcare Monitor and the barriers and facilitators for the implementation of this methodology. • A quantitative evaluation (with a PREM questionnaire; Patient-Reported Exp­ erience Measure) of the perceived quality of care among two patient groups. Group 1 received standard outpatient care (N  =  46, response rate 69.7%) and Group 2 used the Healthcare Monitor (N = 45, response rate 63.4%). • A qualitative evaluation (15 interviews) among patients about the Healthcare Monitor care. The researchers did not find any significant differences between the two groups, which could be explained by the relatively small research groups. Nevertheless, patients from the Healthcare Monitor care group rate all aspects of care as higher

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M. Offerman et al. I feel well prepared for the visit to my physician The consultation with my physician was focused on the symptoms I experience

Healthcare Monitor care

My physician got a complete picture of my situation during the consultation

Standard care

My physician paid attention to my symptoms during the consultation My physician took action in response to my symptoms (e.g.: medication, referral to another specialist) 0,0%

20,0%

40,0%

60,0%

80,0%

100,0%

Fig. 8.3  Differences in the perceived quality of care between standard care and “Healthcare Monitor care”

Theme 1: Improved insights - patient is better prepared

Theme 2: Patient is better prepared - communication improves

Theme 3: Overall positive patient care experience

Fig. 8.4  Main themes derived from the interviews with patients about their experience with Healthcare Monitor care

(see Fig. 8.3). For example, this group more often feels that their physician has a comprehensive view of them and follow up in addressing their symptoms. Patients indicated that they spent an average of 19 min filling in all questionnaires. Over 90% of them found this time neither too long nor too short. From the qualitative interviews, three main themes derived from the experience with Healthcare Monitor care (see Fig. 8.4). 1. By filling in the questionnaires, patients gain better insight into their functioning and how they really feel. The Healthcare Monitor turns out to be a useful tool for the patient to prepare for the consultation with the physician. Patients think beforehand about how they are doing and consequently can better express this in the consultation room. 2. In general, better preparation leads to a better discussion, which in turn contributes to the quality of care [6]. The dashboard overview of patient outcomes is a guideline for the conversation and helps patients to talk about their functioning in a focused way without “forgetting” important outcomes. 3. Working with the Healthcare Monitor contributes to a positive experience of the quality of care. The physician has a complete picture of the patient’s functioning in advance. The fact that physicians get a holistic view with the Healthcare Monitor gives patients a sense of security and of being heard.

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An internal evaluation with health-care professionals who work with the Healthcare Monitor (N = 32, 67% response rate) shows that 88% of them see the added value in this way of working. Among other things, they feel that the discussions with their patients are of higher quality. They also see the added value in being able to identify and discuss improvements or deteriorations when a patient does not bring it up himself during the consultation. However, it does take time to adapt to this working method, including the use of a dashboard in the consultation room. It requires new skills in communicating and counseling patients.

8.4

From Consultation Room to Macro Level

The ENT/Head and Neck Surgery Department of Erasmus MC plans to use the Healthcare Monitor and the outcome information obtained from it at the micro, meso, and macro levels. The Healthcare Monitor is primarily used at the individual, micro patient level in the consultation room, where physicians discuss the outcomes of the individual patient. Dynamically predictive models will further enhance the dashboard. These can automatically process patient data and provide individual predictions of functioning and quality of life. We focus on the integration of medical outcome measures, such as an existing dashboard based on the predictive model OncologIQ [7] we developed which estimates individual life expectancy. This merging of individual data provides patients and physicians with optimal information that enables shared decision-making throughout the entire care process. At the same time, patient outcomes also contribute to research and quality registrations and, in turn, to transparency of quality of care (meso level). The data is already collected at the micro level, it can also be shared as part of the Dutch Head & Neck Audit [8], subject to the patient’s consent. We have developed a dashboard to analyze the functioning of larger groups of comparable patients (peers) at this aggregated level using big data. By merging data from patient outcome measures and medical outcome measures, we can learn to target and optimize care for specific patient (sub)groups. The 2018–2020 project “Gebruiken van uitkomstinformatie bij samen beslissen” (using outcome information in shared decision-making), subsidized by the Dutch National Health Care Institute (Zorginstituut Nederland), involves the exchange of knowledge and skills on a national level (macro level). The ambition in cooperation with the NWHHT professional group, the national Patient Association PVHH, and the NFU Consortium Quality of Care is to coordinate outcome-oriented care and the use of PROMs as much as possible and to arrive at a universal approach. The Healthcare Monitor offers many opportunities to improve the quality of care on an individual and an aggregated level for patients with head and neck cancer. Through partnerships with the NWHHT, PVHH, and NFU, we can share best practices and develop a universal approach to the use of outcome information in clinical practice for people with head and neck cancer.

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References 1. Rogers SN, Hogg ES, Cheung WK, Lai LK, Jassal P, Lowe D, et al. ‘What will I be like’ after my diagnosis of head and neck cancer? Eur Arch Otorhinolaryngol. 2015;272(9):2463–72. 2. Hoesseini A, Dronkers EAC, Sewnaik A, Hardillo JAU, Baatenburg de Jong RJ, Offerman MPJ. Head and neck cancer patients’ preferences for individualized prognostic information: a focus group study. BMC Cancer. 2020;20:399. 3. Pruyn JF, Heule-Dieleman HA, Knegt PP, Mosterd FR, van Hest MA, Sinnige HA, et al. On the enhancement of efficiency in care for cancer patients in outpatient clinics: an instrument to accelerate psychosocial screening and referral. Patient Educ Couns. 2004;53(2):135–40. 4. Mehanna HM, Morton RP. Deterioration in quality-of-life of late (10-year) survivors of head and neck cancer. Clin Otolaryngol. 2006;31(3):204–11. 5. Heijmans M, Brabers A, Rademakers J.  Hoe gezondheidsvaardig is Nederland? Factsheet gezondheidsvaardigheden – Cijfers 2019. Utrecht: Nivel; 2019. 6. Dronkers EAC, Baatenburg de Jong RJ, van der Poel EF, Sewnaik A, Offerman MPJ. Keys to successful implementation of routine symptom monitoring in head and neck oncology with ‘Healthcare Monitor’ and patients’ perspectives of quality of care. Head Neck. 2020;42:3590. 7. Hoesseini A, van Leeuwen N, MPJ O, Zhang J, EAC D, Sewnaik A, Lingsma H, Baatenburg de Jong RJ. Predicting survival in head and neck cancer: external validation and update of the prognostic model OncologIQ in 2189 patients. JAMA Otolaryngol Head Neck Surg. 2019. http://www.oncologiq.nl. 8. https://dica.nl/dhna/home

9

E-Health Application IkHerstel: A Textbook Example of Value-Based Care Judith Huirne, Eva Bouwsma, and Han Anema

Abstract

In order to allow patients to recover better and faster, a lot of energy is put into improving surgical techniques. For example, new techniques are being introduced to minimize the size of the incision, such as laparoscopic and robot-­ assisted operations. However, it takes longer and costs more to perform and teach how to perform surgeries using minimally invasive techniques. The Gynecology and Social Medicine departments of Amsterdam UMC developed the IkHerstel application that guides patients online so that these techniques lead to optimal outcomes. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Recovery · Gynecology · Surgery · Patient participation · Self-management

Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_9) contains supplementary material, which is available to authorized users.

J. Huirne (*) · E. Bouwsma Department of Obstetrics and Gynaecology, Amsterdam University Medical Center, Amsterdam, The Netherlands e-mail: [email protected]; [email protected] H. Anema Department of Public and Occupational Health, Amsterdam University Medical Center, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_9

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During her training as a gynecologist in 2006, Judith Huirne noticed that the degree of recovery and returning to work after minimally invasive treatment did not meet the high expectations. The recovery took longer than expected. Han Anema noticed the same as an occupational health officer; moreover, he regularly saw an inexplicable variation in recovery and returning to work after the same medical procedure. These observations were the start of a long-term collaboration between the departments of gynecology and social medicine, which were later joined by the surgery department as well. During a fellowship abroad in 2007 I learned to apply the latest invasive techniques in gynecology. But to my great surprise it turned out that patients who underwent minimally invasive surgery were not able to return to work faster. Furthermore, we saw that patients recovered much more slowly than we as gynecologists had expected. We were convinced that patients would be back at work four weeks after a laparoscopic hysterectomy. However, our research showed that after eight weeks, half of the patients had not fully returned to work [1]. With the firm belief that patients really do recover faster after minimally invasive surgery, we started investigating patient recovery after surgery. We compared the results of these new techniques with those of conventional surgery by means of a larger abdominal incision. This research was carried out in Amsterdam UMC and was a collaboration between the departments of Gynecology and Social Medicine. (Gynecologist Judith Huirne) As an occupational health physician, I saw substantial variation in recovery and returning to work for patients after the same operations in my consultations. We also noticed that medical specialists often gave no or rather different advice upon returning to work. That was the reason for me to promote consensus in multidisciplinary expert groups of occupational health officers, medical specialists, and general practitioners on recovery times after four common operations on behalf of the College voor Zorgverzekeringen (now the National Health Care Institute) as TNO project leader in 2003. We developed a Delphi method to agree on recommendations on when patients can resume which activities at work and in daily life after a specific operation. (Occupational Health Officer Han Anema)

9.1

Recovery After Surgical Procedures

In further research into the underlying cause by the departments of Gynecology and Social Medicine, the different provision of information by the various health-care providers involved turned out to be an important factor. The medical specialist often did not advise patients on returning to work. This led to a lot of uncertainty among patients and in turn, often delayed their return to work for a long time. However, conflicting advice from different health-care providers also confused the patient, who would then be easily inclined to follow the most conservative recommendations. It also turned out that many health-care providers did not adapt their advice to the surgical method used.

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Predicting Factors for Recovery

The same research showed that there are two important factors predicting recovery after gynecological procedures: • The size of the incision (abdominal incision). • The preoperative expectations of the patient with regard to the duration of their own recovery. The results showed that our efforts to reduce the size of the incision as much as possible are not without merit. But because the patient’s expectations about the duration of the recovery play such an important role, we wanted to optimize the care concerning gynecological surgeries by improving the information provided to patients. This was also necessary in order to maximize the benefits of minimally invasive surgeries. This would benefit not only the patient but also society as a whole by preventing productivity losses in the postoperative period (social costs).

9.3

 evelopment of IkHerstel: Patient Participation D and Self-Management

The IkHerstel project was born. It became our ambition to optimize the health care associated with surgeries and to better guide the patient, with the aim of stimulating the recovery process and allowing the patient to fully participate in society again as soon as possible. In order to carry out and evaluate this project, we received several grants from ZonMw. In focus groups we investigated what information and guidance patients thought they needed regarding an operation and how this would work best. Unambiguous advice with detailed information about which activities they can resume and how long after the operation they should wait to do this turned out to be one of the most important needs of patients. Frequent recommendations such as “listen to your body” and “take it easy” did not enable patients to prepare well for the recovery process [2]. A literature review showed that uniform recovery advice on resuming daily activities was barely available. And recovery advice that was adapted to the degree of invasiveness of a particular procedure certainly did not exist. That is why we brought together different experts (general practitioners, occupational health officers, and gynecologists) in a panel to formulate such specialized recovery advice. For example, the experts formulated when someone could lift 5, 10, and 15  kg, respectively, after a hysterectomy. Naturally, these recommendations differ after a laparoscopic hysterectomy (keyhole surgery) and after an abdominal hysterectomy

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using a large abdominal incision. They were formulated for 38 different activities (such as walking, standing, climbing stairs, cycling, and working) and initially for four different gynecological interventions. The recovery advice was then tested with patients, patient associations (Patiëntenfederatie Nederland), and the various professional associations of gynecologists, general practitioners, occupational health officers, and insurance physicians (NVOG, NHG, NVAB, NVVG) [3]. The next step was to develop an interactive website to promote patient self-­ management concerning the surgery. The use of e-Health is not a coincidence: it is accessible for the user (patient) and is not very labor-intensive for the health-care professional. The most important functionality of the website was the possibility to provide “personal recovery advice”: a personalized schedule that provides insight into when certain activities that are relevant for the patient can be resumed. This recovery advice was formulated based on an algorithm that was developed by the expert panel. Other functionalities of the website were general information on surgical procedures, an informative film for both patients, and employers, practical advice, and a forum [4].

9.4

Effectiveness of IkHerstel in Gynecology

The first evidence of the effectiveness of this interactive intervention was demonstrated in a randomized study of 225 patients after a gynecological procedure. One hundred and ten women were counselled in the usual way and 115 other women were counselled using the “IkHerstel intervention”. It showed that patients in the intervention group had a greater chance of faster recovery than the control group with women receiving the usual care (hazard ratio HR 1.43 confidence interval BI 95% 1.003–2.040). The median duration for a full, sustainable return to work was 39 days (IQR 20–67) and 48 days (IQR 21–69) respectively. In addition, the women in the intervention group scored better on the outcome measures “quality of life” and “perception of pain” than the women in the control group [5]. A process evaluation showed that the patients in the intervention group were actually using the website as intended. They had the impression that the intervention contributed to their recovery and were satisfied about this. The vast majority of this group (85%) would recommend the website to a friend who would also have to undergo such an operation. Health-care providers were even more enthusiastic: 95% would recommend the website to their patients if it were available [6]. We used the results of this process evaluation to further optimize IkHerstel. The website was equipped with a number of new functionalities such as a recovery monitor, which enabled the patient to compare their own actual recovery with the expected recovery, in order to provide more insight into their own function. This updated website was then examined in a large randomized study of the implementation process and its cost-effectiveness. The hypothesis was that implementation of the IkHerstel program could lead to a reduction in social costs because unnecessarily long absences from work, and, in turn, loss of productivity could be avoided.

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This hypothesis was confirmed by a group of 454 patients of whom just over half (227 patients) had access to the IkHerstel website. The median duration for returning to work was 13 days shorter in the intervention group compared to the control group: 49 days versus 62 days: HR 2.66, 95% BI 1/88–3.77 [7]. The intervention cost 80 euros per participant and the average cost for a day’s absence from work is 230 euros. It is therefore not surprising that we demonstrated through this study that the likelihood of cost effectiveness was very high [8].

9.5

The IkHerstel Application in Surgery

After these positive IkHerstel results in gynecology, the idea came about to roll out IkHerstel in other specialisms as well. A project was set up in the surgical field. A new panel of experts (consisting of general surgeons, general practitioners, and occupational health officers) again formulated recovery advice for various surgical procedures, such as inguinal hernia surgery and gall bladder removal, and also larger procedures such as a colectomy, the removal of an entire or a large part of the colon [9]. IkHerstel was now also recommended to men for the first time. In addition, the effect of the intervention was no longer measured with the outcome measure “returning to work”; the focus shifted to resuming daily activities. IkHerstel thus became an intervention from which every patient could benefit.

9.6

Optimization of IkHerstel

It was 2015 now: the technical possibilities had expanded considerably compared to 2009, when we developed the first website. The website was updated and now included an app to allow quick access via a smartphone. New applications were added, such as the possibility to connect a pedometer, as an additional method to monitor one’s own recovery. Patients were also offered the option of an e-consult instead of a physical appointment with the doctor. We now conducted research among 344 participants who underwent minor surgery. Again, IkHerstel proved effective: the median time to resume activities was 21 days in the intervention group and 26 days in the control group (HR 1.38, 95% BI 1.09–1.73) [10]. Research into using IkHerstel for major procedures has just been completed. The first analyses of this again showed positive results.

9.7

Value-Based Care

Based on these results, it can be concluded that IkHerstel is a textbook example of value-based care. IkHerstel enables the patient to optimally prepare for surgery and the recovery process, in other words: self-management is facilitated. As a result, patients are in control of their own recovery, and an unnecessary lengthy recovery and absence from work can be prevented. Furthermore, the use of IkHerstel leads to

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higher patient satisfaction. IkHerstel also benefits the health-care professional: health care is more efficient, e.g., because the informed patient relies on the health-­ care professional less often. And finally, society as a whole benefits from lower health-care costs and reduced productivity losses due to surgical procedures.

9.8

Spin-Out VUmc

The positive research results (greater patient satisfaction, faster recovery, increased quality of life, and reduced costs) gave ample reason for making the intervention— as an e-Health application—available to a wider audience. That is why a spin-out has been set up by VUmc in which Huirne and Anema are involved as advisors. This standalone entity will further develop the e-Health application and make it available to the widest possible patient population in the public domain through hospitals and health-care professionals. In order to achieve this, external funding was obtained to cover all development costs. The application is—given the medical advice it produces—classified as a medical device. For this reason, all national and international laws and regulations, such as the General Data Protection Regulation (GDPR) and the Medical Device Regulation (MDR), must be complied with before the application goes live in the public domain. Very recently the first hospitals are able to recommend IkHerstel to their patients.

9.9

The Future

In addition to the existing algorithms and recovery advice for surgical gynecology and surgery, we develop algorithms for new treatments, such as in obstetrics (e.g., caesarean section), urogynecology (procedures for pelvic floor prolapse and incontinence), and orthopedics (e.g., knee prosthesis). We expect to be able to provide this new recovery advice in mid 2021. The ambition is to develop algorithms for 90% of all planned operations with an actual physical recovery trajectory between 2021 and 2022. In the future we also want to increasingly optimize recovery recommendations by using collected data about the actual recovery of the users.

9.10 External Appreciation and Recognition In addition to publications in various renowned medical journals, such as the British Medical Journal and the Lancet, IkHerstel has also gained recognition from the market, as reflected in various nominations and awards, including the Value-Based Healthcare Prize 2019, the Nationale Zorginnovatieprijs 2020, and the VGZ Zinnige Zorg Award 2020.

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References 1. Vonk Noordegraaf A, Anema J, Louwerse M, Heymans M, van Mechelen W, Brolmann H, et al. Prediction of time to return to work after gynaecological surgery: a prospective cohort study in the Netherlands. BJOG. 2014;121(4):487–97. 2. Pittens C, Vonk Noordegraaf A, van Veen S, Anema J, Huirne J, Broerse J. The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands. Health Expect. 2013;18(5):1397–412. 3. Vonk Noordegraaf A, Huirne JAF, Brolmann HAM, Van Mechelen W, Anema JR. Multidisciplinary convalescence recommendations after gynaecological surgery: a modified Delphi method among experts. BJOG. 2011;118(13):1557–67. 4. Vonk Noordegraaf A, Huirne JAF, Pittens CA, van Mechelen W, Broerse JEW, Brolmann HAM, et al. eHealth program to empower patients in returning to normal activities and work after gynecological surgery: intervention mapping as a useful method for development. J Med Internet Res. 2012;14(5):e124. 5. Vonk Noordegraaf A, Anema JR, van Mechelen W, Knol DL, van Baal WM, van Kesteren PJ, et al. A personalised eHealth programme reduces the duration until return to work after gynaecological surgery: results of a multicentre randomised trial. BJOG. 2014;121(9):1127–35. 6. Bouwsma EVA, Vonk Noordegraaf A, Szlavik Z, Brolmann HAM, Emanuel MH, Lips JP, et al. Process evaluation of a multidisciplinary care program for patients undergoing gynaecological surgery. J Occup Rehabil. 2014;24(3):425–38. 7. Bouwsma EVA, Huirne JAF, van de Ven PM, Vonk Noordegraaf A, Schaafsma FG, Schraffordt Koops SE, van Kesteren PJM, Brölmann HAM, Anema JR.  Effectiveness of an internet-­ based perioperative care programme to enhance postoperative recovery in gynaecological patients: cluster controlled trial with randomised stepped-wedge implementation. BMJ Open. 2018;8(1):e017781.

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8. Bouwsma EVA, Bosmans JE, van Dongen JM, et al. Cost-effectiveness of an internet-based perioperative care programme to enhance postoperative recovery in gynaecological patients: economic evaluation alongside a stepped-wedge cluster-randomised trial. BMJ Open. 2018;8(1):e017782. 9. Van Vliet DC, van der Meij E, Bouwsma EV, Vonk Noordegraaf A, van den Heuvel B, Meijerink WJ, et al. A modified Delphi method toward multidisciplinary consensus on functional convalescence recommendations after abdominal surgery. Surg Endosc. 2016;30(12):5583–95. 10. Van der Meij E, Anema JR, Leclercq WKG, Bongers MY, Consten ECJ, Schraffordt Koops SE, et  al. Personalised perioperative care by e-health after intermediate-grade abdominal surgery: a multicentre, single-blind, randomised, placebo-controlled trial. Lancet. 2018;392(10141):51–9.

From Care Pathway to a Personalized Metro Network

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Marion van der Kolk, Arjan Kouwen, Joris Fuijkschot, and Ingeborg P. M. Griffioen

“In retrospect, I’m surprised the protocol didn’t give any indication to help the patient make a decision about whether or not to have surgery.” A metro network with different decision times and interchanges makes the care process flexible and focused on the patient. We want to take a break together with the patient and consider the next treatment step.

Abstract

Radboud University Medical Center has been working with (health)care pathways for many years. Initially these were mainly focused on quality and safety. Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_10) contains supplementary material, which is available to authorized users. M. van der Kolk (*) Department of Gastro-Intestinal and Oncologic Surgery, Radboud University Medical Center, Nijmegen, The Netherlands e-mail: [email protected] A. Kouwen Institute for Process improvement and Implementation, Radboud University Medical Center, Nijmegen, The Netherlands e-mail: [email protected] J. Fuijkschot Amalia Children’s Center, Radboud University Medical Center, Nijmegen, The Netherlands e-mail: [email protected] I. P. M. Griffioen Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_10

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In 2018, more than 40 care pathways began being redesigned to optimize collaboration and coordination between different specialisms, including primary and secondary care. This makes health care more focused on the patient. The Gastrointestinal Oncology department also wants to create room for shared decision-making at crucial moments in the renewed care pathways for pancreatic and esophageal cancer. This turns a one-dimensional care pathway into a “metro network” with room for personal choices. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Shared decision-­ making · Metroline · Care pathways · Service design in health care · Gastrointestional oncology Many different health-care providers are involved in the perioperative treatment of pancreatic, esophageal, liver, and colorectal cancer: the general practitioner, the gastroenterologist, and oncologist in secondary care, and the multidisciplinary treatment team in a university medical center (tertiary care) including a gastroenterologist, oncologist, radiologist, surgeon, specialist nurse, and case manager. The first priority has been redesigning the care pathways for pancreatic cancer, esophageal cancer, and the Hipec treatment. These are life-threatening cancers, for example, a patient with pancreatic cancer has an average survival rate of 6% after 5 years; if surgery to remove the tumor is possible, this is 25% after 5 years. This is now 40% for patients with esophageal cancer who had surgery. Moreover, the impact of the treatment on the quality of life is great. To achieve these results, surgery is usually combined with chemotherapy and, in the case of esophageal cancer, also with radiation. The question is then: which health-care provider informs the patient about their chances of survival, their options, and the impact of the different treatments? And who supports the patient in sharing their questions, wishes, and goals at different times in the process? This kind of useful information often is not revealed until speaking with the surgeon at the university medical center, even though the process began with the GP. Focus discussions and outpatient clinic consultations showed that the information was insufficiently coordinated between the various disciplines and was not always the same. Also, the different consultations did not always complement each other well. This caused confusion and uncertainty. Taking stock of bottlenecks in the various disciplines, patient experiences from the CQ index, and input from patient days revealed even more bottlenecks. For example, fear and uncertainty increases when these patients shift their focus to surgery because examinations are not properly planned or more examinations are needed. Sometimes examinations are conducted twice as well because the results are not exclusive for the purpose of determining a policy or the sequence of the examinations might not be logical, etc.

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Last but not least, patients may want to reconsider the treatment plan during their journey: they might want to end treatment, start it, or take a break to catch their breath. These are all things that a straightforward care pathway does not properly provide. This is reason enough to make the care pathway more personalized and flexible in order to improve the experience of patients and involve them in their own journey in the best possible way [1]. This is done in two phases.

10.1 I mprovement Phase 1: Toward an Effective and Efficient Patient Journey In 2018, we started to design the gastrointestinal oncology care pathway more effectively and efficiently. This treatment involves real teamwork. We work to achieve the best result for the patient and as a team we want to organize the health-care process as smoothly and pleasantly as possible for the patients. If the patient knows from the outset that the surgery is scheduled in 3 weeks’ time, and we adhere to this schedule despite all the steps that provides certainty and solid footing to work from. That is why we wanted to streamline the collaboration and the process as much as possible and offer the patient as much clarity and guidance as we can [2]. Our aim was to optimize collaboration and coordination between the various specialisms, with maximum support from our Electronic Health Record (Epic®) system. Taking stock of the bottlenecks experienced in the various disciplines involved and of patient experiences (based on the CQ index and patient days) led to a concrete wish list, such as the following: • With our electronic health record, we wanted to be able to exchange more and better information with the patient as well as with other health-care providers inside and outside our own hospital. • Health-care providers needed outcome information to improve health care. • Through Epic, we wanted to plan all appointments more intelligently and efficiently so that the number of visits to the hospital are minimized and the examinations are planned in a logical order. • We wanted to clarify the seriousness of the condition through unambiguous communication. How and when do you inform the patient about opportunities, risks, and chances? This begins with the GP [3]. We formed working groups with the necessary expertise around these concrete points for improvement in which, for example, ICT experts worked closely with health-care providers. A core group directed and connected the efforts and results of the working groups and monitored the objective and planning. One patient was also part of this core group. Her questions and experiences kept us on our toes.

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10.2 A Streamlined Process Focused on the Patient The results of the first phase are mainly that the process is more efficient and focussed for the patient and that there is more collaboration with secondary care. Visible results in the area of focusing on the individual are as follows: • At the outpatient clinic, the patient consults with a surgeon, gastroenterologist, and/or oncologist together. We first started to set up an esophageal chain in order to be able to use it as a blueprint for other gastrointestinal oncological disorders. The case manager is often present as well. The specialists can review each other’s appointment system and can now even stand in for each other too. The advantage for the patient is that they receive one complete explanation of the treatment, which the case manager can clarify after the consultation. • Since October 2019, there has been a health-care day for all gastrointestinal oncology patients in the Surgical department (HIPEC, pancreas, esophagus, CRC, liver, abdominal sarcoma, and benign abdominal tumors). Patients get to know nurses, dieticians, and other health-care providers. They visit the department and meet other patients. Patients have a much better idea of what to expect. That provides them some peace of mind. This initiative is the result of discussions with patients. • The scheduling department informs the patient earlier about the date and time of admission. The process (examinations and appointments) is planned in such a way that the patient can actually be admitted on the planned date, which was not always possible in the past. • More than 90% of our surgical oncology patients use the patient portal: MijnRadboud as a communication system. • The decision assistants for esophageal and pancreatic patients will also be sent to patients via MijnRadboud in the near future so that patients can prepare for making decisions together in a calm environment with peace of mind. • PROMs (questionnaires for patients about their functioning and quality of life) are also sent via MijnRadboud. The outcomes can be viewed in the consultation room so that the physician and the patient can discuss them in a focused manner. In this way, the treatment can be better adapted to what matters to the patient. This is being rolled out hospital-wide. Departments are still in various stages of this process [4]. We are also making progress in the collaboration, such as the following: • Improved collaboration between the hospital, the outpatient clinic, physical therapist, and dietitian. This is a side effect of the intensive collaboration for the health-care day for patients. • Improved collaboration between the hospital and the scheduling departments because the preoperative process has been optimized. • Better collaboration between case managers and nursing specialists thanks to the vision description of their role in the chain.

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• More uniform reporting. The Epic electronic health record system has been set up with “smart phrases,” enabling health-care providers to report in a uniform manner. Based on this, a letter can also be sent automatically to referrers. • Collaboration with secondary care has been improved. For example, at the time of referral we are already making clear agreements about the referral, and we are the first to inform the referrer (gastrointestinal and liver physician in the regional hospital) about the results of the treatment. Although we were satisfied with these results, we saw that more was possible. The time was right for another improvement.

10.3 I mprovement Phase 2: From a Care Pathway to a Metro Network Roel van Oosten’s experience (see Box 10.1) is not an isolated one. In our practice, too, we notice that during the intensive treatment process, patients regularly need a break at the point where we once again decide on the treatment together. This may be because the impact of the treatment on the quality of life is severe, the patient’s life has changed, or the patient simply needs “a break.” A care pathway assumes that every patient moves from A to B in the same way, while patients sometimes want to stop along the way or choose a different route. By shaping care as a metro network with different decision times and junctures, we make the care process—from the primary to tertiary care and back again—flexible and focused on the patient.

Box 10.1 Patient Roel Van Oosten Advocates for a “Break”

Roel van Oosten was diagnosed esophageal cancer and decided not to have a surgery after already receiving treatment with radiation and chemotherapy. His physicians (2015) did not think this was a wise decision. A painful observation for Van Oosten, who argues for more freedom in shared decision-­ making in the trade journal Medisch Contact. The experiences of a fellow patient made him think about it even more. “He had been in hospital four times in the 6 months following esophageal surgery with severe pneumonia due to nocturnal reflux. Despite having a feeding tube, he did not regain his strength. The surgery that resolved a serious illness also proved capable of causing new symptoms. These experiences shocked me and compelled me to decide for myself whether I wanted to undergo this surgery.” “In retrospect, I’m surprised the protocol didn’t give any indication to help the patient make a decision about whether or not to have surgery. I did have a few conversations with the surgeon, but they were focused on chemoradiation and surgery respectively. From the very start, the protocol seemed to be fixed,

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without a mid-term evaluation, without a “break” in which the follow-up process could be discussed. I think this can and should be done better: after chemoradiation there should be at least one or two consultations with a gastrointestinal and liver physician, general practitioner, geriatrician, psychologist, or mental health-care provider—or at least with someone who is not too strict in following the protocol—in order to be able to seriously consider nuances and alternatives as well, so that the patient can follow their heart and head when making a decision. This never happened for me. So I organized my own evaluation.” Because the results of radiology and chemotherapy were very positive, Van Oosten chose, after lengthy deliberation, not to undergo surgery. “I can now look back on my choice with satisfaction. I’ve had two very good years during which the tumor has not returned. I function almost as well as before I began chemoradiation therapy. My experience as a patient has taught me that “protocol” and the desire to make one’s own assessment are at odds with each other. However, there is a way out of this conflict: shared decision-making. This requires a respectful and encouraging attitude from the physician, no matter what the patient decides!” (source: Medisch Contact)

10.4 S  hared Decision-Making Requires a Flexible Care Pathway That is why we want to further develop the care pathways for pancreatic and esophageal cancer as a perioperative “metro line,” already designed by the Vereniging voor Veilige Curatieve Zorg (VVCZ—association for safe, curative health care) in collaboration with Panton Service design for Healthcare, Deventer. This can be done by integrating shared decision-making into the overall care process of patients with esophageal and pancreatic cancer, from the general practitioner to tertiary care at the Radboud university medical center (Fig.  10.1). The “Empower2Decide” project (from the “Transparantie over de Kwaliteit van Zorg” subsidy scheme of the National Health Care Institute) offers us the opportunity to work on this in the Nijmegen—East Netherlands network region. In this project we want to better integrate the tools already developed for shared decision-making in the whole treatment process (from general practitioner to university medical center) and to empower patients. This involves the use of the three good questions, decision tools, consultation cards, etc. These tools support the patient in asking about their options and choices and in delving into these in order to make decisions together with their doctor about their treatment process. There is not a singular decision moment in the case of far-reaching complicated health-care processes such as pancreatic cancer and esophageal cancer. We want to

10  From Care Pathway to a Personalized Metro Network

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Fig. 13.1  Referral algorithm. LBP lower back pain, cLBP chronic lower back pain, axSpA axial spondyloarthritis, CaFaSpa referral algorithm for axial spondyloarthritis, RA rheumatoid arthritis, PsA psoriatic arthritis

• 2: Focus on Achieving Outcomes That Matters Most to the Patient and Decide Together The rheumatologists no longer exclusively focus on achieving biomedical outcomes such as disease activity but also on outcomes that patients report in patient-reported outcome measures (PROMs), which are in turn based on international ICHOM standard sets [6]. Questions are focused on four health areas:

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fatigue, physical performance, participation at work, and quality of life. Patients have a different definition and perception of what good care is when compared to those of physicians. For example, patients often consider things like being less fatigued and remaining on their feet at work to be important, whereas physicians’ main focus concerns the medical aspects. By presenting the results in a dashboard and using the “3 good questions,” joint decision-making is facilitated and focused on patient-oriented outcomes in the consultation room. Enabling patients and health-care providers to prepare through the use of the at-a-glance dashboard, a completely different conversation is created, which in turn often results in a different treatment decision-making process. • 3: Digital Self-Management Coaching We focus on achieving low levels of disease activity in the joints using medication, but also on physical performance, improved function, etc. Together with the rheumatology department of Erasmus MC, the Reuma App© (rheumatism app) has also been developed [7]: a digital self-management coaching module that patients can use themselves. If necessary, we can also refer to a physiotherapist, professional expert, etc.

13.2 Results Digital referral by the general practitioner, started as early as 2010 and has been extensively validated, implemented, and evaluated. Weekly support from a rheumatologist in general practice led to 70% fewer referrals [9]. Exclusive use of the digital referral assistance reduced the number of referrals by 50% and proved cost-effective [2, 10]. Because digital referral assistance is easier to implement in all GP practices, this is probably more cost-effective than weekly support from a rheumatologist at triage. Although this leads to even fewer unnecessary referrals, the costs are relatively high and the scope is relatively low. Focus on outcomes that matters most: Research is been carried out into the implementation of PROMs. Among the rheumatologists involved from the start of the program, 90% use the PROMs in the consultation room; of the rheumatologists who joined at a later stage this number is 50%. More than 60% of patients complete the PROMs. In the initial phase, they are reminded to do so several times: 2 weeks in advance and 1 week in advance via an e-mail alert as well as by telephone, and with a final attempt on the day of the consultation. If patients perceive that health-care providers put these PROMs to use in the consultation room, and in turn—see that completing it is of relevance—spontaneously the clinical routine use of the PROMs will grow. The digital Self-Management coaching module for patients is still in the developmental phase and not yet fully implemented. As such, no results are expected yet for 2020.

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13.3 Experiences of Patients and Health-Care Providers In order to firmly anchor patient values in value-based care, a patient council (with around 60 participants) was set up in 2016 for rheumatology. This council is positive about the use of the PROMs and the dashboard. It helps patients to gain a better understanding the course of the disease process and how they can influence it themselves. The dashboard helps them to better prepare the discussion. Patients notice that the conversation in the consultation room is more about their personal experiences and lives. The consultation is more central to what matters most to in their lives. In general, most patients with other symptoms (who the GP no longer refers to the rheumatologist) approve of receiving treatment in primary care, especially if they know that their GP is in close consultation with the rheumatologist in this area. GPs are positive about the digital choice aid for the referral, but integration into their referral system is crucial to succeed. Because it is cumbersome to work with two systems. With the new version of the referral system, this will probably be implemented feasible. Within Santeon, seven specialized top trainee hospitals, including the Maasstad Hospital, are working together on improving outcomes and cost. Two times a year outcomes and cost are compared between the hospitals. Possible factors that might explain the observed differences in outcomes and cost are discussed, and improvement processes are initiated. Health-care professionals are very positive since they can improve their daily practice based on the outcomes that matter.

13.4 Implementation From the very start, we were aware of the importance of thorough implementation. For example, to initiate change you start with a small program led by a program manager. However, in order to introduce the change more broadly, you need to return control to the line management and get the full support of the Executive Board. For example, the Maasstad hospital strategic plan 2017–2021 gives innovation and value-based care a central role. Another condition for success is broad commitment, with a central role for the patient, involvement of ICT and health-care professionals. This is a time-consuming process, but only in this manner can innovation be secured. For example, all employees of the outpatient clinic were involved and trained in the innovations. Many questions from patients about completing PROMs or from general practitioners about the use of the decision tool are directed to the nurse or the medical secretarial office. It is important that these specialists can address and help them in the moment. Patients were also involved in the implementation from the start. The local patient council is closely monitoring the changes to these kinds of processes. For example, based on their feedback, the default view of the results in the dashboard was simplified. Likewise, additional background information is currently hidden as clickable links. Patients also indicated that they were not necessarily in need of their outcomes being compared to those from a similar patient population.

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From a process perspective, the role of the specialized rheumatology nurse is optimally utilized by giving them a central role in deciding together (phase 2) and in rolling out self-management (phase 3). These nurses are once again working on what they do best: providing (interconnected) care along the patient journey. As a result, the rheumatologist has more time for the medical side of the patient journey.

13.5 Input for Improvement During implementation, the plan-do-act cycle proved extremely useful. Is what you have come up with working out or do you need to make adjustments? Every quarter the rheumatology team continues to evaluate and compare the results, that is provided and explained by the ICT department, with the aid of a data analyst. This way we learn from each other and work as a team in achieving and retaining better process and patient outcomes. The Maasstad Hospital’s rheumatology team also stays on top of innovations that might contribute to self-management, collaboration with primary care, and cost-­ effective quality assurance. Providing value-based care is a never-ending process.

References 1. ValueBased HealthCare Center Europe. http://vbhcprize.com/joint-­value/. 2. Jamal M, Korver AM, Kuijper M, Weel A, et al. The IMPACT study: a clustered randomized controlled trial to assess the effect of a referral algorithm for axial spondyloarthritis. PLoS One. 2020;15(1):e0227025. https://doi.org/10.1371/journal.pone.0227025. 3. Karreman MC, Weel AEAM, et  al. Performance of screening tools for psoriatic arthritis: a cross-sectional study in primary care. Rheumatology (Oxford). 2017;56(4):597–602. https:// doi.org/10.1093/rheumatology/kew410. 4. van Hoeven L, Weel AE, et al. External validation of a referral rule for axial spondyloarthritis in primary care patients with chronic low back pain. PLoS One. 2015;10(7):e0131963. https:// doi.org/10.1371/journal.pone.0131963. 5. van Delft E, Lopes Barreto D, Weel A, et al. A study protocol on the evaluation of referral strategies for inflammatory arthritis in primary care patients at the level of healthcare organization, patient relevant outcomes and costs. Health. 2020;12(03):240–52. https://doi.org/10.4236/ health.2020.123020. 6. Oude Voshaar MAH, Das Gupta Z, Bijlsma JWJ, et al. International Consortium for Health Outcome Measurement set of outcomes that matter to people living with inflammatory arthritis: consensus from an international working group. Arthritis Care Res (Hoboken). 2019;71(12):1556–65. https://doi.org/10.1002/acr.23799. 7. https://www.reumaapp.nl. 8. Crowson CS, Matteson EL, Myasoedova E, Michet CJ, Ernste FC, Warrington KJ, et al. The lifetime risk of adult-onset rheumatoid arthritis and other inflammatory autoimmune rheumatic diseases. Arthritis Rheum. 2011;63:633–9. https://doi.org/10.1002/art.30155. 9. Delft E, Han KH, Hazes JMW, Lopes Barreto D, Weel-Koenders AEAM. Efficiency of triage by a rheumatologist in primary care for patients suspect for inflammatory arthritis: Preliminary Results. Value in Health. 2020;23(S2). 10. Abdelkadir MJ, Kuijper M, Appels C, Spoorenberg A, Hazes J, Van Hoeven L, Lopes Barreto D, Weel AEAM. Cost-effectiveness analysis of a CAFASPA referral model for axial spondyloarthrtis. Ann Rheum DIS. 2020;79(S1).

Cardiometabolic Health-Care Network: The Right Care in the Right Place Through Customized Treatment

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Karin Kaasjager, Monique Prinssen, and Dorien Zwart

A patient: It gives me confidence that my GP consults the specialist so easily; they talk about me specifically. General practitioners indicate that they do not need to refer eight out of ten patients thanks to teleconsultation.

Abstract

More than 1.9 million patients in the Netherlands suffer from cardiometabolic disorders, such as increased risk of cardiovascular diseases, diabetes, hypertension, chronic kidney damage, obesity, and dyslipidemia. Partly due to the aging

Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_14) contains supplementary material, which is available to authorized users.

K. Kaasjager (*) University Medical Center Utrecht, Utrecht, The Netherlands e-mail: [email protected] M. Prinssen Huisartsen Utrecht Stad (HUS), Utrecht, The Netherlands D. Zwart Department of Family Medicine, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_14

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of the population, this number will only increase in the future. A small proportion of these patients are treated in the hospital—often by people in different disciplines—but for the majority of patients, cardiometabolic care takes place at their GP’s practice. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Cardiometabolic disorders · Network medicine · Shared decision-making · Interprofessional learning · Patient participation Cardiometabolic disorders often occur simultaneously and have common risk factors. This results in care that is often complex and fragmented, based on many different guidelines and health-care standards. This is at the expense of individualization and has negative consequences, such as the unnecessary use of medication, resulting in side effects and reduced compliance with the treatment plan. Patients also indicate that the archetypes of the “diabetic patient” and “hypertensive patient” do not exist and that they want personalized care.

14.1 Network Medicine: The Health-Care Network Project Ideally, care for patients with cardiometabolic disorders should be organized in a network: with and surrounding the patient, close to home. In our vision, healthcare providers work together transmurally and adjust optimal care to the patient’s wishes. The boundaries between the general practitioner, the peripheral hospital, and academia are disappearing. In this way, care is no longer fragmented, disorders are treated in a cohesive way, and the people and places that offer the best possible care to the individual patient are continuously being assessed. By embracing technological innovations, more and more care can be provided at a distance. Care comes to the patient as much as possible instead of the other way around. The general practitioner guarantees an integral, person-oriented medical approach, and the specialist is given a more supervising role in complex medical problems. Within the network, health-care providers learn from each other about the optimal care for the patient. From this perspective, initially supported by the Stichting Kwaliteitsgelden Medische Specialisten (Foundation for Quality Funds Medical Specialists, SKMS) project of the Federatie Medisch Specialisten (Federation of Medical Specialists, FMS), we launched a project in the region to develop a transmural care network for patients with cardiometabolic disorders. The fact that patients are closely involved in both the application and the development of this project has proven to be of great value. To guarantee the quality and defragmentation of cardiometabolic care with the right and individualized care in the right place, we wanted to provide a health-care network that included a platform for easily accessible teleconsultation from a specialized medical team in the field of cardiometabolic disorders across the board

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(with an even broader range on demand), a web tool supported by various patient organizations, which brings together the existing guidelines as a digital umbrella Regionale Transmurale Afspraak (regional transmural agreement, RTA) for cardiometabolic disorders, a Pharos-tuned e-module for the patient, and finally, tools for the consultation room such as U-Prevent to provide personalized treatment advice. The goal was to provide value-based care in the consultation room through a network. In order to stimulate network care, interprofessional and transmural collaboration, in which joint learning and improvement of care is the basis for creating a learning care network, is indispensable. This way of working begins during the training of our future doctors. Supported by the Bewustzijnsproject (awareness project, effectiveness of care during training), interprofessional training of various residents from hospitals and GP practices has always been an important area of focus in network medicine. Meanwhile, network medicine is prominently featured in the Modernisering Medische Vervolgopleidingingen (modernizing medical continued education, MMV) program within the framework of the new project Opleiden 2025 (training 2025).

14.1.1 Optimal Care Roundtables However, it also stimulates joint learning between specialists and general practitioners, in which we believe we should go a step further than the current joint training of general practitioners and specialists who mainly focus on the exchange of knowledge. An effective learning care network requires action-oriented learning and improvement in which the health-care providers take joint responsibility for providing optimal care within the network. The ZonMw-funded project “ZOrg op de juiste plaats in UTrecht (ZOUT)” (care in the right place in Utrecht) is developing the format of “Optimale Zorg Tafels” (optimal care roundtables) for this purpose. At these “optimal care roundtables” the general practitioners, specialists, and their patients discuss the reality in the health-care network on the basis of patient experiences and information from linked patient records of the participating medical professionals. In addition to making the exchange of knowledge and practical experiences possible, the optimal care roundtables are explicitly action-oriented, which means that the participants conclude each optimal care roundtable by discussing activities that they are going to carry out in order to apply lessons learned and achieve the opportunities for improvement that were identified. We consider questions such as “is the patient being seen in the right place?”, “should we carry out our ideas in accordance with the guidelines and regional agreements and why or why not?”, and “do we all know what we need to make the right choices?”. Using input from patients, the professionals answer these questions. They will carry out any agreed activities in their own practice or care organizations, and must be able to rely on the necessary support. The intention is that a real conversation is had at these “optimal care roundtables”, and this requires “bravery” (https://www.optimalezorg-­ dapperedokters.nl) from both professionals and patients.

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14.2 One Point of Information Our first goal in setting up a health-care network was to make the mutual collaboration and the translation of the guidelines in the consultation room more accessible. For the communication of medical content, we opted for a cardiometabolic platform, accessible via teleconsultation. Teleconsultation is not new, but was easily available. Until now, it was mainly used for single disorders, such as telenephrology. In order to prevent this fragmentation and multiple points of information, we opted for an unambiguous platform. Together with the general practitioners and the patients, we have repeatedly improved this form of consultation with action research. Via this cardiometabolic platform, primary health-care providers can obtain easily accessible specialized medical advice in the field of cardiometabolic disorders. The general practitioner can contact one point of information with any questions they may have. Through the teleconsultation with the specialists, the patient receives personalized treatment advice, without this being at their own risk. This allows the patient to easily benefit from specialized advice without the need for referral. This will help address issues sooner. The general practitioner can, through good collaboration and in coordination with the specialists, remain the coordinator more often. In this way we strengthen each other and form a caring and learning network (see Box 14.2). A cardiometabolic web tool has also been developed with the support of various patient associations, where the various updated guidelines come together. Its aim is to better support the cohesiveness of the various guidelines with appropriate treatment and enable an individualized approach in the consultation room. This cardiometabolic web tool can be used by doctors and practitioners in the consultation room (e.g., during the annual check-up) and can also be used for further training, individually or in groups. The “optimal care roundtable” will always discuss whether the web tool delivers what is intended and whether improvement is necessary. Together with the patient, and supported by Pharos, an e-module has been developed with which the patient can review what has been discussed in the consultation room. This e-module can serve as a reference and also offers further in-depth information and additional knowledge. This e-module tries to clarify the relationship between the different risk factors and disorders. It needs no further explanation that support from Pharos is very important in order to provide this information to patients with limited health literacy and low literacy in general. This is important because a better-informed patient generally has greater potential for self-management. Patients who want to and are able to do so are given tools with which they can take control in establishing the treatment plan. A patient does not have to use it, but they can if they so choose. Elderly patients also seemed able to use it, provided they were given clear instructions first. In addition, we learn to use other tools in the network to maximize individualization and value-based care in the consultation room. U-Prevent is an example of this (see Box 14.1).

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Box 14.1 U-Prevent

Many Dutch people suffer from a chronic cardiovascular disease. There is also a group that uses preventive medication to avoid these diseases. The risk of cardiovascular disease and the effectiveness of the treatments differ for everyone and depend on personal characteristics. In order to calculate the risk for the individual patient and to offer personalized health-care advice, the UMC Utrecht developed the website U-Prevent.nl. U-Prevent can predict how many cardiovascular disease-free years a person can expect by lowering cholesterol, lowering blood pressure, quitting smoking, etc. This information provides patients with the opportunity to be involved in making decisions about starting or ending treatment using cardiovascular medication and allows the physician to take on a coaching and advisory role. This enables the patient to participate in the decision-making process. That is what the name U-Prevent alludes to: “You are in control.”

Box 14.2 A Great Added Value for Physicians and Patients

“The cardiometabolic network gives me, as a GP, the opportunity to easily ask the specialist for advice,” says Monique Prinssen, GP in Utrecht. “Moreover, because there is only one point of information, I no longer have to think about where and to whom I can ask my question. This enables me to provide care in the right place. I also notice that patients really like the fact that it is easy to discuss things and that they can think and read along with me. In case of complex problems, I can always refer them, if not care can be provided with personalized advice in primary care—close to home. Many patients have a combination of cardiometabolic diseases. The opportunity to ask questions to a multidisciplinary team then has a great added value for both the patient and the GP.”

14.3 Shared Decision-Making and Learning The structure of the learning and caring network empowers not only the health-care professional in the network, but also the patient. This leads to improved shared decision-making. After all, defragmentation of health care and showing the patient that they are working together instills confidence. Providing a central place where patients can find unambiguous information and education about their conditions also ensures a better-informed patient, who is part of the network. For the patient, network medicine means that health-care professionals are better able to provide the right care in the right place, with attention to individualization. Patients gain insight into the relationship between the conditions and the influence of lifestyle and medication on the course of their diseases. They also learn why

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some diseases come with an increased risk of developing other cardiometabolic diseases, and why it is important to prevent them. In addition to gaining a better understanding of the medication they are taking, it is also explained that additional medication does not always mean that they are sicker, but rather that the chance of them becoming sicker is reduced. As health-care professionals, we also learn together that choices can be made, depending on what the well-informed patient wants. Not everything can or should be done. Providing this information in one central place, coordinated by the network, prevents patients from receiving conflicting advice. We also hope to improve treatment compliance. The learning network is also there for the residents who will coordinate health care in the future. Interprofessional training is a clear component in the network. This can be in the form of teleconsultation, for example, or by having a look at each other’s practice. The residents learn that network medicine promotes the right care in the right place and provides effective care. The optimal care roundtables are an important tool for this. Also, this generation will use e-Health much more often and more naturally. It is for that reason that the FMS set up the Opleiden 2025 project in the field of development of the medical specialist further education. Interprofessional training and the new themes (network medicine, the right care in the right place, shared decision-making, e-Health) are of paramount importance here.

14.4 Hopeful Results Teleconsultation has many advantages over consulting a specialist by telephone. The specialist can respond to the consultation when it suits him best, they can think longer about the answer, and the specialist often receives more background information about the patient. Through our platform, we often consult in teams. Moreover, it is documented care. Teleconsultation may be cost-effective: previous research has shown that the possibility of teleconsultation can prevent referrals and overcome problems at an earlier stage. Moreover, a patient needs to travel less and will be absent from work less, which promotes the sustainability of care and reduces the social impact. Both the specialist and the general practitioner decide together with the patient whether the physical consultation can also be replaced by a virtual consultation as is possible using video calls. The results of network medicine for cardiometabolic patients in general are encouraging. General practitioners indicate that they do not refer eight out of ten patients thanks to teleconsultation. The result is also that the patient has still not been referred and is seen by the GP after 1 year. Therefore, you can provide health care close to home from a learning and caring network. Patients have the feeling that better quality is delivered and like the fact that the GP can easily contact the specialist at the hospital. They are more satisfied because they understand more about their own situation, due to tools such as the e-module, and also because of shared decision-­making and by reading the teleconsultation. We receive reactions such as, “Finally all healthcare providers are working together,” “My GP allows

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me to take charge, but I don’t have to,” “I like being able to read what the specialists think,” “I have more time to think about the questions I want to ask,” and “It gives me confidence that my GP consults the specialist so easily; they talk about me specifically.” Network medicine can be a blueprint for chronic disease management. One of the challenges for the immediate future is to support this better from an e-technical point of view. In addition, the Ministry of Health, Welfare and Sport and health insurers will also have to consider how this can be secured financially. We must prevent the current financial chain system from slowing us down in order to organize health care differently. In order to set a movement in motion so that the right care can be provided in the right place as cost-efficiently as possible, you have to properly grease the wheels. Network medicine may be the grease needed for these wheels.

Integrated Health Care for Ischemic Stroke Patients

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Bob Roozenbeek, Markus P. J. M. Wijffels, and Bianca I. Buijck

Patients who suffered from ischemic stroke and their loved ones experience the integrated care that was provided as fragmented. It is often not clear who is in charge. In order to gain insight into the results of the provided health care in the network, we measure all of our patients’ health outcomes and process indicators. Bundled payment makes it easier to make choices that focus on the interests of the patient.

Abstract

For more than 20 years, there has been collaboration in the Rotterdam region on good health care for patients with an ischemic stroke. Despite this collaborative Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_15) contains supplementary material, which is available to authorized users. B. Roozenbeek (*) Department of Neurology, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] Markus P. J. M. Wijffels Department of Rehabilitation Medicine, Rijndam Rehabilitation, Rotterdam, The Netherlands e-mail: [email protected]; [email protected] B. I. Buijck Department of Neurology, Erasmus University Medical Center / Rotterdam Stroke Service, Rotterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_15

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effort, coordinated by the Rotterdam Stroke Service (RSS), care remained too fragmented. Four health-care providers from the RSS and a health insurance company joined forces to maximize the value of care for patients with an ischemic stroke in the Rotterdam region. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Ischemic stroke Integrated care · Bundled payments · Shared savings · Outcomes · Regional collaboration Health care for patients who have suffered from an ischemic stroke is delivered by multidisciplinary teams of health-care professionals at different types of healthcare providers: hospitals, rehabilitation institutions, and primary care. Immediately after the stroke occurs, health care is provided at the hospital (acute phase). After acute treatment has taken place and the medical analysis has been completed, the patient is discharged to their home or to a rehabilitation department (rehabilitation phase). This can be a geriatric rehabilitation department in a skilled nursing facility or a specialized medical rehabilitation center. After completion of the rehabilitation treatment, the chronic phase begins. During this phase there are often longlasting effects of the stroke. Patients have often returned home during the chronic phase, but if the effects are serious, a long-term stay at a nursing home may be necessary. For more than 20 years, we have been collaborating in the Rotterdam region on providing good health care for patients who have had an ischemic stroke. The health care is coordinated by the Rotterdam Stroke Service (RSS) [1]. Within the RSS, seven hospitals, seven geriatric rehabilitation institutions, a specialized medical rehabilitation center, and many primary care professionals participate. The RSS uses a network protocol and has its own quality system, including self-assessments and external audits. Nevertheless, patients and their families still too often perceive the provided health care as fragmented. It is often unclear to patients who is in charge of the care, especially with regard to learning to cope with the effects of the stroke. There are also bottlenecks with regard to admission and discharge processes of the network. Our analysis showed that, although we collaborate within the network, we do not have joint responsibility for the final result. This causes institutions involved to mainly focus on the care they provide in their own part of the network, which contributes to the sense of fragmentation. This is reinforced by the method of reimbursement for integrated care. To date, reimbursement agreements have been made between health insurers and individually involved health-care institutions. This reimbursement system prevents intensive collaboration between institutions.

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15.1 Practice To deal with these problems, four health-care providers from the RSS and one health insurer have entered into a collaboration agreement.1 The underlying ambition of this collaboration is to maximize the value of health care for patients with a cerebral infarction in the Rotterdam region by providing personalized integrated health care. In order to realize this ambition, we have made the following agreements with each other: • We repeatedly measure the outcomes of all patients up to 2 years after the stroke. • We give these outcomes a central role in our dialog with the patient. • As network partners, we are jointly responsible for the outcomes and costs of the health care. • We will make health-care payment integrated as well, by using bundled payments.

15.1.1 Measuring Outcomes in the Entire Network In order to gain insight into the results of the provided health care, we measure all of our patients’ health outcomes and process indicators. We do not only focus on the acute or rehabilitation phase, but on the entire network. We do this by monitoring patients up to 2 years after their cerebral infarction. The ICHOM Standard Set for Stroke is the basis for the measurements [2]. This outcome set consists of medical outcomes and patient-reported outcomes. The set includes the main areas in which patients with an ischemic stroke may experience health-related problems. During the acute phase, we record data on the patient’s history, the characteristics of the stroke (such as clinical severity), and the acute treatment (thrombolysis, thrombectomy). In the rehabilitation phase, we collect information about the impact of the stroke on their daily life, rehabilitation intensity, and possible complications. After 3 months, each patient receives a check-up at the hospital’s neurology outpatient clinic. Patient-reported outcomes are collected using a tablet prior to this checkup appointment. After 1 and 2 years (chronic phase) we measure these outcomes again. These repeated measurements are aimed at detecting the long-term effects of ischemic stroke. The outcome data collected at the involved institutions are pseudonymized and linked by an independent party, Dutch Hospital Data (DHD). This linked data is made available to health-care professionals on an aggregated level via a dashboard. In this way, we gain insight into the characteristics of the patients we have treated, the flow through the network, and the results of the health care. These insights serve as a basis for quality improvement of the network-wide health-care process (Fig. 15.1).

1  The collaborating healthcare institutions are Erasmus MC, Laurens, Rijndam Revalidatie, and Transmitt Revalidatie. The health insurer is Zilveren Kruis.

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Fig. 15.1  The ICHOM Standard Set for Stroke forms the basis for measured outcomes (www. ichom.org)

15.1.2 Outcomes as a Basis for the Dialog Between Health-Care Professionals and Patients In addition to improving quality, the outcomes have an important role within the care of the individual patient. We use them as a screening tool for health-related symptoms and for limitations in daily life. The effects of an ischemic stroke vary widely. Some people mainly suffer from physical problems (such as problems with mobility), while many people primarily suffer from invisible effects (such as irritability, sadness, or cognitive problems). These physical, cognitive, and emotional consequences determine, in the patient context, whether they can resume their daily life (work, household, sports). Each outpatient consultation starts with a review of the outcomes entered by the patient, which we display via a consulting room dashboard (Fig.  15.2). This

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Fig. 15.2  Screenshot of the consultation room dashboard

immediately clarifies what the main problems are. The outcomes are used by healthcare professionals as a starting point for the dialog with the patient. Because of this new way of working, we can better focus on the needs of the individual patient. For example, if a patient scores high on a screening question about depression, the health-care professional will use the consultation to discuss this theme with the patient. This conversation can lead to the joint decision to refer the patient to a psychologist for treatment. The initial experiences of both patients and health-care professionals with this way of working have been positive. It helps with discovering what problems the individual patient is facing more quickly and adjusting the treatment accordingly.

15.1.3 Joint Responsibility In the collaboration agreement it has been agreed that the health-care institutions will accept joint responsibility for the quality and outcomes and the associated costs of care throughout the network. In order to guarantee this responsibility, a collaborative structure has been developed (Fig. 15.3) [3]. The final responsibility lies with a management team (MT) that consists of representatives of the hospital, the specialized medical rehabilitation and geriatric rehabilitation, Rotterdam Stroke Service, and an independent financial specialist. In view of the necessary commitment of expertise in a wide range of areas, the MT is given maximum support by experts from the organizations that are involved. An Advisory Team coordinates the involvement of these specific experts. There is a contact point in every organization for each topic. The Advisory Team also provides topic programming for the MT, arranges for solicited and unsolicited advice to be given to the MT, and prepares the decision-making process.

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Management of Quality Improvement Care Path Team B

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Fig. 15.3  Schematic representation of collaboration within the health-care network

An essential part of the collaboration is the implementation of a system for continuous quality improvement throughout the health-care network. A Network Team has been set up for this purpose. This Network Team consists of a clinical leader (physician) from each health-care institution involved. These clinical leaders each lead the local Healthcare Pathway Team within their own health-care facility. The Network Team and the Healthcare Pathway Teams use the measured outcomes as a basis for improving health care. These outcomes have been linked by DHD and made available via a dashboard. By using a PDCA cycle (Plan, Do, Check, Act), the teams implement interventions aimed at improving the quality of health care throughout the network. One of the first topics that the Network Team has looked into is providing insight into the health-care pathway that each patient follows throughout the entire network (the “patient journey”; Fig. 15.4). These insights are used to better align the different parts of the health-care pathway. One of the bottlenecks was that the provision of information to patients about what expectations they may have about rehabilitation was insufficient. For this reason, an animated film was made to provide patients with better information during their admission to hospital [4]. The Geriatric Rehabilitation Care Pathway was developed in order to better identify the processes and agreements concerning the transition (admission, discharge) of patients. In various ways (value-stream mapping, interviews, and expert meetings), bottlenecks in the transition of patients have been identified and process interventions have been

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Fig. 15.4  “Patient journey” of an ischemic stroke patient. (Design by Panton, www.panton.nl)

set out again on the basis of this, such as shorter communication lines, waiting list management by transfer nurses, and workflow management.

15.1.4 Bundled Payment The health-care institutions involved have agreed with the health insurer to make use of a bundled payment. Bundled payment means that the network partners collectively receive one amount per patient from the health insurer as reimbursement for the health-care costs that incurred. The responsibility for the mutual distribution of this amount lies with the health-care institutions themselves. The basic principle is that, in doing so, the money is used to follow the needs of the patient, instead of the needs of the organization. An example: it is better for patients to be hospitalized for a short period of time so that they are able to enter the clinical rehabilitation department sooner. Previously, rehabilitation institutions were restricted financially if rehabilitation took too long, which meant that patients were only welcome there once they had sufficiently recovered medically. As a result, they stayed in the hospital longer than necessary. Bundled payment makes it easier for health-care professionals to make choices in which the interests of the patient are the focus, and not the financial interests of the institution. If the patient is transferred from the hospital to the rehabilitation center earlier and has to stay there longer, part of the bundled payment (which would have previously gone to the hospital) can now benefit the rehabilitation center. The amount of the bundled payment is based on a selection of health-care products that are relevant for patients with a cerebral infarction and historical reimbursement data. The health-care institutions make an individual claim to the health

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insurer. The bundled payment is valid for 1 year. After 1 year, the health insurer compares the total claims of all health-care institutions involved with the bundled payment amount. If less than the bundled payment amount has been claimed, then there are shared savings. For example, this might be the result of more efficient coordination of integrated care between the health-care institutions. Each year, the health-care institutions and the health insurer set quality targets based on relevant outcomes. If these quality targets are achieved, the health-care institutions will receive the shared savings. These can then be used for quality improvement. If more has been claimed than the bundled payment amount and the outcomes are of a high level, the health insurer will take care of these shared losses. Conversely, if the outcomes are poor, the health-care institutions will take care of the shared losses mutually and the health-care insurer will not pay out any shared savings. These agreements serve the purpose of our collaboration: to maximize the quality and value of ischemic stroke care.

15.2 Patient Experiences The use of outcomes as a basis for dialogs in the consultation room is an essential part of our new Rotterdam approach. The initial patient experiences seem to be positive. However, there is a need for thorough scientific evaluation of how patients and health-care professionals experience this approach. For example, do patients find that this makes health care better adapted to their specific health-care needs? Do they feel that there are more opportunities to make decisions about their treatment? Can health-care providers better focus on the problems that are relevant to the individual patient? The members of the Expertgroep CVA of the NFU Consortium Kwaliteit van Zorg have joined forces to answer these questions. Expert group members from the Erasmus MC, UMC Utrecht, and Amsterdam UMC/AMC location have developed a research project for this purpose. Patients with a cerebral infarction who went home after being admitted to hospital will be invited for this study. Participating patients receive a questionnaire about their experiences with the use of outcomes and the discussion with the health-care professional. In a quarter of the participating patients, we will conduct an additional semi-structured interview, which will provide more detailed insight into the patient’s experience. We will interview the participating health-care professionals once about their experiences with the use of outcomes during their consultations. The results of this study are expected in the first half of 2021.

15.3 Results The project described above for integrated care for patients with ischemic stroke started on January 1, 2019. The first year was used to start collecting and linking the data. Thanks to the great dedication of all those involved, this has been achieved.

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Meanwhile, health-care providers use the results as a starting point for every discussion at the outpatient clinic. The improvement dashboard is operational and helps the MT and the Network Team to formulate improvement actions. The teams use the quality targets set for 2020 as a basis. These quality objectives focus on three outcomes: • Functional recovery—measured using the Modified Rankin Score (mRS). • Quality of life—measured using the EuroQol Five Dimensions score (EQ5D). • Transition through the integrated care service as a measure of collaboration— expressed as the length of time spent in hospital. These quality targets are based on the results achieved in previous years (Fig. 15.5). Our collaboration agreement has a duration of 3 years. At the end of the term, we expect that our intensive collaboration will have led to further integration of integrated care and to measurable improvement in the outcomes of ischemic stroke patients. It is our ambition to further expand our collaboration in the future with other hospitals in the Rotterdam region, primary care professionals, and other health insurers. In this way, we want to further improve the quality of integrated stroke care in our region.

References 1. www.rotterdamstrokeservice.nl. 2. Salinas J, Sprinkhuizen SM, Ackerson T, et al. An international standard set of patient-centered outcome measures for stroke. Stroke. 2016;47:180–6. 3. Krajnc A, Van Zon T, Roozenbeek B et al. Sturen op waarde in geïntegreerde zorg. Delen van ervaringen en een verkenning voor de inrichting van het netwerk Herseninfarct in Rotterdam. www.sturenopkwaliteit.nl/projecten/waardegedreven-­zorg/. 4. Animatiefilm: Wat gebeurt er al u een beroerte hebt gehad? www.rotterdamstrokeservice.nl.

Working with Outcomes in Perinatal Care

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Alies Depla, Lyzette Laureij, and Hiske Ernst-Smelt

Abstract

Parents-to-be are involved with many different health-care providers during pregnancy and childbirth. As with other health-care situations, we should assess perinatal care more in terms of its benefits, fostering continuous improvement in accordance with the concept of value-based health care. In perinatal care, we want to shift the focus from processes to outcomes, and involve parents-to-be in decisions about their own care path and in assessing outcomes and experiences. For that reason, it is useful to work with a set of clinical and patient-reported outcomes. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Perinatal care · Shared Decision-making · Pregnancy · Postpartum period · Maternal Health Services · Patient reported outcome measures

Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_16) contains supplementary material, which is available to authorized users.

A. Depla (*) Department of Obstetrics and Gynecology, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Utrecht, The Netherlands e-mail: [email protected] L. Laureij · H. Ernst-Smelt Department of Obstetrics and Gynecology, Erasmus University Medical Center, Sophia Children’s Hospital, Rotterdam, The Netherlands e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_16

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In 2016, ICHOM released the Standard Set for Pregnancy and Childbirth [1, 2]. ICHOM standard sets are developed by international working groups of care providers, data experts, and patient representatives. By standardizing the relevant outcomes of the entire care process, patients and health-care providers can make well-informed decisions together on the care process that matters to the individual patient. This allows patient-centered quality improvement.

16.1 Outcome Set The Pregnancy & Childbirth Set (hereinafter referred to as the “PCB Set”) consists of clinical outcomes and patient-reported outcomes and experiences (PROMs and PREMs). At five moments, questionnaires are used to collect patient-reported outcomes and experiences about different domains (Fig. 16.1). Examples of these domains are quality of life, pelvic pain and dysfunction, depression, and confidence in and success with breastfeeding. Patient-reported data is collected during pregnancy, just after childbirth, postpartum check-up, and 6 months postpartum. In this way we collect outcome and casemix information prior to childbirth, shortterm outcomes just after childbirth, and longer-term outcomes 6  months postpartum.

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The PCB Set and the target group are unique. Pregnancy and childbirth are as such not diseases. Mothers-to-be are mostly healthy but have a relatively low risk of adverse outcomes. Nevertheless, these adverse outcomes may have serious long-­ term consequences for the lifelong health of mother and child. Outcome information provides the woman and her health-care provider with insight into how she is doing and what is important to her. Furthermore, health-care providers can learn from variations in outcomes, and adjust the care to the individual woman. It is not at all coincidental that many Dutch perinatal care professionals were involved in the development of the PCB Set. In recent years, the demand in the Netherlands for value-based health care has grown, in which we want to connect to many new and existing initiatives. Therefore, it was a logical step to adapt the original PCB Set for use in the Netherlands, and then implement it.

16.2 Complex Multidisciplinary Network Perinatal care in the Netherlands consists of a complex and multidisciplinary network. Community midwives, hospital, and maternity care organizations collaborate in a Verloskundig SamenwerkingsVerband (obstetric collaborative network—VSV). There are 72 VSVs in the Netherlands, delivering care based on the Zorgstandaard Integrale Geboortezorg (health-care standard of integral perinatal care). Depending on her risk profile, a pregnant woman is supervised by a primary, secondary, or tertiary care provider. After childbirth, the care for mother and child is transferred to the primary care provider as soon as possible. The funding program “Het gebruiken van uitkomstinformatie voor Samen Beslissen” (using outcome information for shared decision-making) of the Netherlands Healthcare Institute enabled us to implement the Dutch version of the PCB Set in seven VSVs, with the aim of stimulating shared decision-making [3]. Based on clinical and patient-reported outcomes, women can make better informed decisions about their own care path, together with their health-care providers. The clinical outcomes of the PCB Set are outcomes that are already routinely collected in daily practice and are recorded the electronic patient record. At a data collection time point, the pregnant or postpartum woman receives a questionnaire to report her results (PROMs and PREMs). These questionnaires are sent digitally. The results give the woman and her health-care provider the opportunity to prepare for the consultation. The woman becomes aware of the subjects that are important to her, and the health-care provider gains insight into the results of the woman prior to the visit via a dashboard. Individual outcomes are discussed in the consultation room, and are used to provide the right care, tailored to the individual wishes and options. We also develop new care pathways and agreements between health-care providers, to facilitate the right care. The PCB Set contains patient-reported outcomes that have not been measured or discussed with the patient up to now, e.g., mother–infant attachment and incontinence. Patient-reported outcome information may also reveal

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that current care requires fundamental changes, e.g., because depression or incontinence may occur more frequently than expected. We expect that such findings will enhance collaboration with other medical specialties and other professional disciplines for such symptoms. By signaling such outcomes earlier, appropriate care can be provided in a timely manner, and we can potentially prevent more profound care over the long term. This way, we will deliver care with a life course approach.

16.3 Patient Experiences Prior to implementation of the PCB set in seven VSVs, its applicability to the Dutch setting of perinatal care and the feasibility of its use in the consultation room were assessed. Many care providers expected the collection of PROMs and PREMs to be too burdensome for pregnant and postpartum women because of the frequency of the data collection time points and the number of questions. Thus, we conducted two studies focusing on the opinions and experiences of women. This allowed us to adjust the PCB Set and the logistics of distributing the questionnaires to the Dutch situation as much as possible. In the applicability study, women shared their opinion in a focus group [4]. This showed that the target group sees the advantage of value-based, personalized health care. According to the participants, discussing the outcomes in the consultation room can contribute strongly to shared decision-making. Completing a questionnaire five times was not considered a burden, under the condition that the results are discussed. However, the participants in the focus group did feel that discussing certain patient-reported outcomes, such as incontinence and pain during sex, is taboo. They did not know how often these outcomes occur and what the treatment options are. Participants indicated that incontinence is “one of the inevitable consequences of childbirth” and as long as the health-care provider does not mention it, women are not inclined to talk about it (Box 16.1).

Box 16.1 Make Sure You Use the Questionnaires in the Consultation Room

Mrs. B. is pregnant with her second child. During her first pregnancy and childbirth, several problems occurred. B. had premature contractions and her child was born without a heartbeat. After giving birth, she suffered from depression. “That is why I have now consciously opted for counseling at the Mental Health outpatient clinic of the Sophia Children’s Hospital, Rotterdam. I am now more aware of mental health symptoms and hope that, with good counselling, I can address them sooner. My child will be born in September.” “After the initial consultations, I received seven questionnaires by e-mail. But filling out the form was quite quick: I was done after 15 min. Not all the questionnaires were relevant to me and some of them asked rather aggressive questions. For example, you were asked whether you had a home, whether you had used drugs, and whether you had suffered abuse. The questions about

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living conditions did not apply to me at all.* And I do feel that if they did apply to someone, they might prefer to keep it secret, especially if they don’t know exactly what happens to the answers and who ultimately has access to them. Some questions did apply to me, like those about anxiety and tension during childbirth. Those kinds of questions give me more insight into my anxiety and that can then help me discuss them during the consultation. As a pregnant woman, you usually only talk about your physical symptoms and pain, and before you know it, the consultation is over. So it is very important that the completed questionnaires are given high priority for the discussion in the consultation room. The doctor can also change the topics of discussion based on the answers. The questionnaires are useful in those cases. Doctors and counselors need to know what I struggle with and what I need. That is why I consciously discussed my experiences and needs in the first consultation. So you should definitely keep sending these questionnaires, but try to tailor them to the individual patient, clearly explain what they are used for, and ask for feedback on how the questions come across. And, make sure you use the questionnaires in the consultation room.” *Note: These items are not part of the PCB Set, but were specifically added for the Mental Health outpatient clinic of the Sophia Children’s Hospital.

Women appeared to be enthusiastic about the patient-reported outcomes and experiences, especially when they are used to improve their care. Nevertheless, we also observed that the perceived dependency of the health-care provider may bias the answers by pregnant and postpartum women: this can prevent honest answers. The data collection time point at 6 months postpartum is considered an important moment for evaluating the longer-term outcomes of perinatal care. Women experienced it as a shortcoming that there is no routine visit to the obstetric care provider at 6 months postpartum. They stressed that trust in the health-care provider, with whom they discuss the outcomes, is essential as well. They also indicated that clear information is needed in advance about what value-based health care is, including its importance. The feasibility study tested the questionnaires of each data collection time point with pregnant and postpartum women, as well as with various health-care providers [5]. The women indicated they were prepared to fill in a questionnaire five times, provided they knew beforehand what the purpose of the questionnaire was and that the results would be discussed. Both health-care providers and women considered discussing the answers with each other as most important regarding outcome measurement. This also applied to the data collection time point at 6 months postpartum, which is not yet a standard consultation in current obstetric practice.

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Measuring and discussing outcomes provided more insight into what really matters to women, and contributed to delivery of appropriate health care, such as referral to a pelvic floor specialist for incontinence. Most women did not experience any discomfort when discussing their answers but considered it an opportunity to talk about their experiences with their health-care provider. The most important prerequisite for use in the consultation room was good IT support so that women can fill in the questionnaires online prior to a consultation; the health-care provider can see the answers prior to the visit, and the data can easily be transferred when a woman is referred. Only then, the outcomes can contribute to appropriate care.

16.4 Results The standard PCB Set has been adapted to the Dutch situation based on several points [6]. As a result of the applicability study, we have added questionnaires about shared decision-making, pain management, the role of the partner, and the continuity of health care. The questionnaires have been carefully translated into Dutch. Pharos, the Dutch Centre of Expertise on Health Disparities, has advised on how to rewrite some questionnaires and patient information for target groups with low health literacy. The adapted Dutch PCB Set is currently only available in Dutch. It was agreed which health-care providers are responsible for discussing the outcomes at different data collection time points with the various parties in the perinatal care sector. The overlap with existing questionnaires has also been assessed and fine-tuned so that women do not receive too many or identical questionnaires. Various IT solutions have been implemented to collect the results from the target group, and to present them clearly to the women and health-care providers. We are searching for solutions that are suitable in the current participating regions and later on are usable in the rest of the Netherlands. For that reason, we also collaborated with Babyconnect, the program of the Dutch Ministry of Health for data exchange in perinatal care. Where needed, Pharos made the developed applications more accessible to women with low health literacy. In addition, educational tools have been developed for providers to familiarize themselves with the new method of value-based health care, such as e-modules and conversational skills training. Moreover, we are looking at effective educational tools for VSVs to learn from the outcomes at an aggregate level. To enhance shared decision-making, the “3 goede vragen” (3 good questions) have been customized for perinatal care (https://3goedevragen.nl). These questions support the woman to make decisions together with her health-care provider. She is invited to ask the health-care provider about what her options are, the advantages and drawbacks, and what the best option is in her situation. This way, during the implementation of the outcome set, we are also working on a practice in which shared decision-making becomes the standard.

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16.5 Further Development The initial experiences from the pilots will be used to employ the outcome information for improvement and further implementation of shared decision-making. This new way of working is expected to contribute to a better understanding of the most important outcomes for perinatal care at the national level. Based on clinical metrics and patient-reported outcomes and experiences, health-care providers can further improve perinatal care, especially for the individual woman in the consultation room. Furthermore, outcome information can be used to improve existing decision tools in perinatal care, such as the tool for choosing a method of delivery after a previous Cesarean section. This allows women to base their choice on the experiences of a large group as well. It is desirable that the questionnaires and patient information are made available in other languages too so that a larger proportion of the target group can complete them. In addition, health-care providers need reference values of the outcomes in order to be able to identify outliers in a timely manner and to provide personalized health care. Also, this may provide women with insight into how their outcomes compare to those of other women. For some outcomes reference values are already known, for others more and more information will gradually become available. Finally, other collaboration partners of the VSVs, such as Preventive Child Healthcare, will join us in examining how long-term outcomes can be discussed and improved. There are still some informational and technical bottlenecks that need to be resolved before various health-care providers can share patient data. This will be further developed through a regional approach, but any VSV can already start measuring PROMs and PREMs. This is already happening in three of the seven pilot regions.

References 1. International Consortium for Health Outcome Measurement. Standard set pregnancy and childbirth. 2016. https://ichom.org/files/medical-­conditions/pregnancy-­and-­childbirth. 2. Nijagal MA, Wissig S, Stowell C, et  al. Standardized outcome measures for pregnancy and childbirth, an ICHOM proposal. BMC Health Serv Res. 2018;18(1):1–12. https://doi. org/10.1186/s12913-­018-­3732-­3. 3. Bespreken Uitkomsten Zwangerschap met de Zwangere (BUZZ)-project 2018–2020. Zorginstituut Nederland. https://www.zorginstituutnederland.nl/werkagenda/subsidieregelingen/subsidieregeling-­transparantie-­over-­de-­kwaliteit-­van-­zorg/thema-­2018-­het-­gebruik-­ van-­uitkomstinformatie-­voor-­samen-­beslissen. 4. Laureij LT, Been JV, Lugtenberg M, et al. Exploring the applicability of the Pregnancy and Childbirth outcome set: a mixed methods study. Patient Educ Couns. 2020;103(3):642–51. https://www.sciencedirect.com/science/article/pii/S0738399119304306. 5. Depla AL, Ernst-Smelt HE, Poels M, Crombag NM, Franx A, Bekker MN. A feasibility study of implementing a patient-centered outcome set for pregnancy and childbirth. Health Sci Rep. 2020;9999:e168. https://doi.org/10.1002/hsr2.168. 6. Hazelzet J, Laureij L, Ernst H.  Ontwikkeling Uitkomstenset Moeder en Kind. Sturen op kwaliteit, Nederlandse Federatie van Universitair Medische Centra, Consortium Kwaliteit van zorg. 2018:1–26. https://www.sturenopkwaliteit.nl/uploads/pdf/SoK_T2_Moeder_en_Kind_ Definitieve_Eindrapportage.pdf.

The State of Patient-Centered Breast Cancer Care: An Academic Center’s Experience and Perspective

17

Arvind Oemrawsingh, Jan Hazelzet, and Linetta Koppert

Abstract

In the Netherlands, approximately one in seven women will be diagnosed with breast cancer (https://www.rivm.nl/bevolkingsonderzoek-­borstkanker, https://www.cijfersoverkanker.nl/). There is an increasing trend to use patient-reported outcomes ­measures (PROMs) in clinical practice as the survival and other oncological outcomes for early-stage breast cancer patients are excellent, regardless of the type of breast surgery performed (Lagendijk et al., Int J Cancer 142(1):165–175, 2018; Litiere et al., Lancet Oncol 13(4):412–419, 2012; Poggi et al., Cancer 98(4):697–702, 2003). Keywords

Value-Based Health Care · Personalized Care · Quality of Care · Breast Cancer · Patient-Reported Outcome Measures · Surveys and Questionnaires · Quality of Life

Electronic Supplementary Material The online version of this chapter (https://doi. org/10.1007/978-­3-­030-­63746-­0_17) contains supplementary material, which is available to authorized users. A. Oemrawsingh (*) Section for Medical Decision Making, Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] J. Hazelzet Center for Value Based Health Care, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] L. Koppert Department of Surgical Oncology, Erasmus University Medical Center, Rotterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_17

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17.1 Value-Based Breast Cancer Care In a desire to improve the quality of breast cancer care provided in the Rotterdam region, an initiative was taken in 2015 by a dedicated breast cancer team from the Erasmus University Medical Center to shift toward value-based breast cancer care [1] (Fig. 17.1). The overall aim was to measure outcomes achieved rather than the volume of services delivered [2]. Following the dedication of the Erasmus MC’s executive board to transform the major academic health care institution toward a value-based health care (VBHC) framework, the multidisciplinary breast cancer team (including medical oncologists, surgical oncologists, plastic and reconstructive surgeons, radiation oncologists, nurse practitioners, breast cancer nurses, clinical geneticists, and psychologists) took the opportunity to realign health services with patient needs. It started with redesigning a care pathway, which not only included determining time points for follow-up patient consultations with different disciplines but also time points for outcomes measurement and evaluation. Within a VBHC framework, these outcomes are both provider-reported (e.g., mortality, complication rates, readmission rates) and patient-reported outcome measures (PROMs). These outcomes are mostly disease-specific and reflect the entire care cycle, long-term disease burden, and quality of life.

Intake

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Fig. 17.1  Erasmus MC’s blueprint facilitates the disease teams on their journey toward VBHC [1]

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17.2 Patient-Reported Outcome Measures For the development of a disease-specific outcomes set, patients in different stages of treatment were surveyed about which outcomes they deemed most important. After an extensive search for validated questionnaires related to these outcomes, an outcomes set was defined encompassing both generic (e.g., EQ-5D-5L, EORTC-­ QLQ-­C30) [3] and breast cancer-specific questionnaires (e.g., BREAST-Q, EORTC-­ QLQ-­BR23) [4] (Fig. 17.2). Most PROMs are administered around the moment of

EUROQOL - 5D - 5L CLAVIEN-DINDO

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HEALTH-RELATED QUALITY OF LIFE. • PHYSICAL FUNCTIONING • EMOTIONAL FUNCTIONING • SOCIAL FUNCTIONING • ABILITY TO WORK • DEPRESSION • PAIN • FATIGUE

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Fig. 17.2  Erasmus MC’s standard set for breast cancer [1]

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diagnosis (T0), 6  months after surgical treatment (T6), and then annually (T12– T60) (Fig. 17.2). In addition to PROMs, case-mix variables and therapy plan were documented.

17.3 ICHOM Concurrently, in collaboration with the International Consortium for Health Outcomes Measurement (ICHOM), the Erasmus Academic Breast Cancer Centre contributed to the development of a standardized breast cancer outcomes set which included both clinical and patient-reported outcomes [5]. The determined (follow-­up) time points for outcomes measurement in the ICHOM breast cancer set are hugely similar to those determined for the breast cancer care pathway by the Erasmus MC.

17.4 D  ata Collection Tool, Web-Based Platform and Corresponding Dashboard The development of a data collection tool and secure platform was the next step that was taken before the actual implementation of the VBHC strategy [1]. The electronic data collection tool enables, after selection of the right care pathway, the automatic distribution of PROMs to patients. The questionnaires are sent out through emails automatically at the appropriate time points, prior to patients’ visit at the outpatient clinic. If the PROMs remain uncompleted, a weekly reminder was sent by email up to 3 weeks before consultation. A secure web-based platform (Zorgmonitor) was constructed by using two open source software programs (LimeSurvey and GemsTracker). By linking the data collection tool to the electronic health record and developing a user-friendly dashboard, it became feasible for physicians to review the course of PROM scores over time prior to the consultation at the outpatient clinic (Fig. 17.3). Since the development of this platform, physicians have reported a better sense of the individual patient’s symptoms or quality-of-life issues. This has also encouraged physicians to address sensitive topics (e.g., sexuality) with their patients that they otherwise might not have.

17.5 R  egionale Oncologienetwerken and Dutch Hospital Data (DHD) In an effort to jointly monitor and improve the quality of breast cancer provided, eight breast cancer centers from the southwest region of the Netherlands signed an agreement in 2018 to implement value-based breast cancer care. Each participating hospital is responsible for its own implementation. One component is the systematic collection of PRO data within the region for benchmarking purposes. The results would then prompt improvements in quality of care within the region. It was jointly

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Physical well-being 100 90 Breast satisfaction

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Fig. 17.3  Spider plot representing different PROM scores per follow-up point (239 patients) [1]

decided that all participating breast cancer centers would measure the ICHOM breast cancer outcome set, as it would facilitate international benchmarking in the future. The Dutch Hospital Data (DHD), a non-for-profit foundation founded by the Nederlandse Vereniging van Ziekenhuizen (NVZ) and The Netherlands Federation of University Medical Centres (NFU), can assist the hospitals to uniformly record and integrate clinical outcome and patient-reported outcome data in their electronic health records. The DHD manages and processes various data records from the hospitals, and can also facilitate the (outcome) data deliveries that meet strict privacy requirements.

17.6 Past Projects In collaboration with Borstkankervereniging Nederland (BVN), a national patient advocate society, the Academic Breast Cancer Centre conducted a study to demonstrate the differences between estimated PROM scores and normative and reference scores, and also to evaluate breast cancer survivors’ satisfaction and expectations with the administration of PROMs [6]. Based on the responses of almost 500 patients who had undergone surgery more than 6 months ago, the authors found that estimated EORTC-QLQ-C30 and EORTC-QLQ-BR23 scores were not significantly different from normative and reference scores. The only exception was the

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“Physical Wellbeing” domain (BREAST-Q), with lower scores being reported in this study compared to normative scores. The comparison of PROM scores with normative and reference scores could allow an adequate evaluation of the quality of care provided. The authors also concluded that the majority of patients found the administration of PROMs either “acceptable” or “very acceptable.” Patients reported that PROMs could be used as their own “guidance tool” during their individual care, and also that routine PROM use could improve the quality of care in general. A collaboration between the departments of Surgical Oncology and Medical Decision Making in the Erasmus MC led to the publication of a systematic review in 2018 on methods of PROM collection and their facilitators and barriers in clinical breast cancer care [7]. The majority of the 34 included articles reported that the collection of PROMs had a promising impact on patients (high adherence rates, less symptom distress, high acceptability, and satisfaction with PROM administration methods), care providers (more informed clinical decision-making, better symptom management), and care processes/systems (more referrals, less emergency room visits, improved patient–provider communication). Commonly described facilitators (Fig. 17.4) were the use of technological collection methods (e.g., tablet computer, smartphone) and the presence of a “champion” who promotes the use of PROMs in clinical practice. Barriers that were most often described in included studies were technical issues (e.g., lack of integration of a PRO dashboard into the electronic health record, problems with logging into the platform, data security) and time constraints in the outpatient clinic workflow.

Technical facilitators

Behavioral facilitators

Other facilitators

- Technological platforms (e.g. web-based, smartphone apps)32 - Graphical PRO(M) reports11,29 - Consistency in PRO(M) score/ scale meaning11,29 - Customized PROM questions for individual patients11,29,31 - Integration of PRO(M) results in the EHR29

- Daily tracking of PRO(M)s can reduce patient’s recall period44 - Providers receiving PRO(M) feedback32 - Presence of change champions in the clinic31

- Protocols for PRO(M) administration31 - Monitoring of PRO(M) scores by patients29 - Notifications when clinicians/providers have reviewed PRO(M) results16 - Academic & research value/intrest in PRO(M) collection31

PROM intervention

Technical barriers - Security of patient data21 - IT issues (e.g.log in, email notification, Wi-Fi signal strength, web browser incompatibility, synchronization with the EHR)11,19,22,31

Behavioral barriers - Patient perception of decreased value when patient-provider relationships have been estabilshed28 - Relationship between willingness and older age?

Fig. 17.4  Description of facilitators and barriers [7]

Other barriers - Incomprehensibility of PRO(M) questions/items19,22 - Variation in item relevancy over disease stages and treatment phases28 - Time constraints in clinic workflow19,22,28 - Expenses37 - Patient recall period19,22 - PRO(M) respondent burden44 - Large amounts of (daily) patient data leading to ‘noise’, variability and bias44

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In 2018, another study was published by the Academic Breast Cancer Centre aimed to obtain reference PROM scores and also to determine the associations between patients’ age, time since breast surgery, type of breast surgery, and other predictors to PROM scores [8]. Retrospectively collected PROMs (EQ-5D, EORTCQLQ-C30/BR23, and BREAST-Q) from approximately 760 pTis-T3N0-­3M0 breast cancer patients, who had undergone breast cancer surgery between 2005 and 2016, were analyzed. One observation was that most PRO modules had high completion rates (88–100%) with the exception of “Sexual Wellbeing” (BREAST-Q). Multivariable regression showed that mastectomy alone and implant-­based reconstructions were associated with lower “Satisfaction with Breasts” (BREAST-Q) score compared to breast-conserving therapy (BCT). Significantly lower “Satisfaction with Breasts” scores were also associated with radiation therapy. Increasing age was associated with lower “Physical functioning” and “Sexual functioning” scores (EORTC-QLQ-C30).

17.7 Current/Future Projects Over the past 4 years, the Academic Breast Cancer Center has garnered considerable patient-reported outcome data. These PROMs were prospectively collected within the value-based breast cancer framework. Researchers from the department of Medical Decision Making and Surgical Oncology are collaboratively analyzing this patient-reported outcome data to gain more knowledge on general and breast ­cancer-­specific quality-of-life issues pertaining to this population. In addition, there is also research being conducted on methodological issues (e.g., statistical uncertainty, case-mix adjustment, and missing data) that influence the analysis and interpretation of PROMs [9]. The goal is to use this data in the outpatient clinic when consulting patients prior to surgery and during follow-up. By showing pre-surgical patients the trajectory of PROM scores of patients treated in the past, it may provide them more context when deciding between different (surgical) treatment options. This may lead to an improved shared decision-making process and low decisional regret. One study, for example, displays the course of PROM scores within different surgical treatment strategies (BCT vs. mastectomy alone vs. mastectomy plus breast reconstruction) over a one-year follow-up [10]. An analysis of almost 260 breast cancer patients demonstrates a significant reduction in median “Satisfaction with Breasts” scores over twelve months for patients following mastectomy alone and mastectomy plus breast reconstructive surgery. A significant reduction in “Sexual Wellbeing” scores over one  year was also observed in patients who underwent BCT.  The course of PROM scores during follow-up may help both patients and clinicians to better understand the impact of surgical treatment for breast cancer and manage expectations.

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Upcoming studies will focus on establishing Dutch normative scores and Minimal Clinically Important Difference (MCID) scores for the BREAST-Q instrument [11]. An MCID score indicates the smallest change in the PROM score that patients perceive to be important [12]. These topics need to be explored as it will enhance the interpretability and thus usefulness of PROMs in patient-centered care and comparative effectiveness research. As part of the NFU VBHC program, four university medical centers have started to collaborate and agreed to use the same breast cancer outcomes set. As part of the European University Hospital Alliance (EUHA), the Erasmus MC has jointly committed with eight other university hospitals to drive innovation, share expertise in health care and research, and learn from each other in order to ultimately maximize the quality of care. Therefore, the Academic Breast Cancer Center and the other international partners intend to share clinical and patient-reported data for benchmarking purposes. Most institutions have utilized the ICHOM breast cancer outcome set. Acknowledgements  Author A.O. and J.H. were supported with a grant from The Netherlands Federation of University Medical Centres (NFU).

References 1. van Egdom LSE, Lagendijk M, van der Kemp MH, van Dam JH, Mureau MAM, Hazelzet JA, et al. Implementation of value based breast cancer care. Eur J Surg Oncol. 2019;45(7):1163–70. 2. Porter MTE, Teisberg Olmsted E. Redefining health care: creating value-based competition on results. Boston: Harvard Business School Press; 2006. 3. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76. 4. Pusic AL, Klassen AF, Scott AM, Klok JA, Cordeiro PG, Cano SJ.  Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q.  Plast Reconstr Surg. 2009;124(2):345–53. 5. Ong WL, Schouwenburg MG, van Bommel ACM, Stowell C, Allison KH, Benn KE, et al. A standard set of value-based patient-centered outcomes for breast cancer: the International Consortium for Health Outcomes Measurement (ICHOM) initiative. JAMA Oncol. 2017;3(5):677–85. 6. Lagendijk M, van Egdom LSE, Richel C, van Leeuwen N, Verhoef C, Lingsma HF, et al. Patient reported outcome measures in breast cancer patients. Eur J Surg Oncol. 2018;44(7):963–8. 7. van Egdom LSE, Oemrawsingh A, Verweij LM, Lingsma HF, Koppert LB, Verhoef C, et al. Implementing patient-reported outcome measures in clinical breast cancer care: a systematic review. Value Health. 2019;22(10):1197–226. 8. Lagendijk M, van Egdom LSE, van Veen FEE, Vos EL, Mureau MAM, van Leeuwen N, et al. Patient-reported outcome measures may add value in breast cancer surgery. Ann Surg Oncol. 2018;25(12):3563–71. 9. Bell ML, Fairclough DL.  Practical and statistical issues in missing data for longitudinal patient-reported outcomes. Stat Methods Med Res. 2014;23(5):440–59.

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10. Oemrawsingh A, van Leeuwen N, Mureau MAM, Lingsma HF, Verhoef C, Klazinga NS, Hazelzet JA, Koppert LB. A prospective analysis of longitudinal patient-reported outcomes within breast cancer surgical treatment strategies (submitted). 2020. 11. Cano SJ, Klassen AF, Scott A, Alderman A, Pusic AL.  Interpreting clinical differences in BREAST-Q scores: minimal important difference. Plast Reconstr Surg. 2014;134(1):173e–5e. 12. Cook CE.  Clinimetrics corner: the Minimal Clinically Important Change Score (MCID): a necessary pretense. J Man Manip Ther. 2008;16(4):E82–E3.

Part III Conditions

Organizational Foundation for Personalized Health Care

18

Nico van Weert and Piet ter Wee

Abstract

The interdisciplinary team is the lifeblood of personalized health care. But what is needed to sustain this? In this chapter, we will discuss the organizational design in which personalized health care thrives. We rely on knowledge and experience from research and practice and the collaboration in the NFU-­ consortium Quality of Care. In addition to the team, its task, and accountability, necessary support and providing information are discussed. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Interdisciplinary teams · Clinical pathways · ICT · Patient-reported outcome · Clinical outcome · Costs

18.1 The Interdisciplinary Team Providing personalized care requires team work: physicians, nurses, and other health-care professionals contribute in close coordination with each other to develop the care best suited to the patient. In order to organize this, the condition and patient group must first be identified as well as the health-care process the patients go through. After all, we determine which disciplines and specializations are to be

N. van Weert (*) Society Personalized Health Care, Nijmegen, The Netherlands P. ter Wee CMO, Amsterdam University Medical Center, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_18

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included in the team. This is obvious when we look at it from the patient’s perspective, but it is not provided for in the organizational structure of hospitals. Departments are generally divided into specializations, which means that diagnostic, medical, surgical, and paramedical contributions to care are each well embedded, but the relationship between them has no clear ownership. We often see initiatives to collaborate across departments, but we fail the initiators and the health-care sector if we fail to give these a place in the organization. In other words, assigning responsibility to an interdisciplinary team requires an explicit extension of the usual organizational structure and, for that reason alone, an explicit arrangement. We see that happening more often now. The experience in the Value-Based Care program of the NFU-Consortium Quality of Care is that ad hoc solutions only suffice in the startup phase. A hospital-­ wide development toward personalized health care requires a program that forms teams, finds a place for them, and helps them on their way. The ownership can then grow and the tasks and responsibilities of the team can be distinguished in a recognizable way from those in the line organization. The responsibility of the team extends beyond the care task. After all: “everyone in healthcare really has two jobs when they come to work every day: to do their work and to improve it” [1]. Porter and Teisberg propose that these two tasks be organized in an “integrated practice unit” (lPU) [2]. ln an IPU, all health-care and facilitating staff bear joint responsibility for the creation of value for the patient. The authors developed this concept in such a way that the connection of an IPU with the hospital organization is no longer included. They seem more likely to have independent treatment clinics in mind than hospitals. The experience with the focused factory makes it plausible that this kind of organizational structure offers advantages with regard to efficiency for unambiguous single disorders for which the treatment can be highly standardized. However, for more complex conditions, multimorbidity, and the optimal adjustment of the care to the patient’s personal needs, preferences, and values, the standalone clinic certainly does not always seem to be the best structure. The core of what is needed can be well organized if the interdisciplinary team of health-care providers can work with permanent and increasingly specialized members and have an overview of and control over the care for the patient group it focuses on [3]. In addition to an appropriate organizational structure, a team also deserves support in focusing and tackling its own work. Box 18.1 shows the compass that is being developed in the Erasmus MC to set a common course for the disease-­ oriented teams.

Box 18.1 Quality Is in the Eye of the Beholder

Rob Baatenburg de Jong, Mieke Hazes, and Marinella Offerman [for author information see Chap. 8] It is important to make quality measurable, but there is a downside: our quality approach can be reduced to numbers. With this, the “traditional” side

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of quality of care is pushed into the background: how strong is the diagnostic capacity of the doctor, how good is the quality of the indication for an intervention, how reliable are the radiologist and the pathologist in their judgment, how well does a clinical specialist operate, and how competent and committed is the nurse? This is remarkable because these aspects in particular are, according to many, the real core of medical action. Last but not least, supporting disciplines contribute greatly to the quality of our care: what about the quality of lab technicians, ICT professionals, cleaners, etc.? However, if everything is important, how do we get a handle on it? We believe that you can find support in choosing and adhering to important guiding principles; standards and values if you so choose. The domains that are important here are culture, leadership, working environment, and professional quality. A health-care organization would do well to formulate guiding principles for each of these domains. For example, in health-care culture, a blame-­ free environment or Safety II could be chosen. There are a lot of options for leadership style. It is clear that selecting a direct, autocratic, or facilitating leader impacts the quality of the collaboration and other areas, and, in turn, the quality of care. For example, the domain work environment includes the quality of the building, the technology, ICT, and the OR. These are elements that increasingly determine the quality of care. Professional quality is described in the previous section and includes craftsmanship, knowledge and science, technical and communication skills, clinical reasoning, integrity, and empathy. For example, guiding principles in our profession are “primam non nocere” and “in dubio abstinae.” Open doors indeed, but how often are they not under pressure from production figures, progress of trials, etc.? At Erasmus MC, our guiding principles are translated into a Quality Compass in consultation with our patients. That compass serves as a guide in the workplace. By also applying it in recruitment and selection as well as during training, we strive to give appropriate attention and appreciation to professional quality. In addition to the measurable elements of quality, this gives a more complete picture of the complex concept of quality, and we hope to stay closer to the intention of health care. Furthermore, when working together as a team, there is a need to develop nonclinical skills, particularly collaboration skills. Amsterdam University Medical Center has developed an interesting training program for this (see Chap. 19) [4]. In addition, it also requires that “everyone in health care” undergoes formal training for the “improvement” task. Together with the NFU-consortium, Kees Ahaus and Martine de Bruijne developed an Advanced Training Program for Value-­ Based Care [5]. In this program, clinicians and other team members were trained in recognizing room for improvement based on data and in the approach and evaluation of improvement in collaboration with colleagues and stakeholders. The course is based in part on the training developed by Brent James at Intermountain Healthcare

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(Salt Lake City, USA) and the resulting training at The Jönköping Academy for Improvement of Health and Welfare (Jönköping, Sweden) [6].

18.1.1 The Health-Care Process The organizational task of the team is primarily to describe the health-care process. The development of a clinical pathway is preferred. Not only does the team define what it considers to be its responsibility, it also provides the members with a common view of the entire team and lays a solid foundation for interdisciplinary teamwork [7]. By seeing one’s own work as a contribution to that whole, the awareness of where optimization is possible grows faster [8, 9]. That is the natural beginning of an improvement cycle. In 2018, the NFU-consortium outlined the core elements and follow-up steps in the booklet “Bouwstenen voor werken aan waardegedreven zorg” [10]. In order to achieve personalized care, the method of clinical pathways is often used, which has been developed in Belgium and the Netherlands since the year 2000 under the leadership of the Leuven Institute for Healthcare Policy at the University of Leuven [11]. The method was applied early on and has since been widely used in the Netherlands. It is considered the best substantiated intervention from the Integrated Practice Units concept [12]. In Box 18.2, three Radboud University authors describe the Radboud university medical center’s approach.

Box 18.2 Health-Care Pathways Are a Good Foundation for Personalized Health Care

Arjan Kouwen, Marion van der Kolk, Joris Fuijkschot [for author information see Chap. 10] In 2017, Radboud university medical center launched the redevelopment of health-care pathways, with the strategic objective of expressing personal focus at an acceptable cost. The aim was to achieve this by developing a method to implement health-care pathways and, above all, to learn from each other and make this knowledge widely available. Health-care pathways address the care of a specific patient group, specify their objectives, and include core elements of care based on evidence and best practices. The sequence of activities, the division of tasks, and communication are established in a health-care pathway [13]. We have also focused on the standardization of working methods and registration in the pathway. This is the only way we can effectuate the conditional support using the Electronic Health Record (EHR). Moreover, in our view, a health-care pathway (care plan) must be dynamic in the sense that there is room to accommodate new developments. With this we assume that departments and health-care professionals can standardize health-care pathways themselves in the EHR.

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Results of This Approach That is how we are going to achieve personalization: • Health-care pathway teams involve their patients and evaluate the health-­ care pathway with their patients. • Combined appointments: Examination and check-up on the same day, or a health-care day for patients before surgery. During the health-care day, patients who will be operated on in the coming weeks will receive joint information about procedures, expectations during admission, and a tour of the department by nurses, physiotherapists, dieticians, etc. They then meet health-care providers and fellow patients. • Decision tools are further developed to be used, to enable patients to make better decisions about the right choice of treatment for them within their own context. • Better information for patients about the health-care pathway. • Aftercare can be initiated sooner at the patient’s request. Our next step is to introduce shared decision-making from primary to tertiary health care: implementation in the Radboud network. We increase the value of care by achieving the same objectives with less effort: • Various health-care pathways use PROM questionnaires and evaluate based on outcomes in the health-care pathway either in EPIC or manually. • PROMs and anamnesis are included in EPIC which leads to efficient EPIC administration and reduction of the registration burden for the doctor. • Less practice variation and better compliance with the agreements made within a health-care pathway through the construction and development of common smart sets in the EHR and one-time registration for multiple use. • Faster turnaround times achieved through combined appointments. Some interventions lead to additional costs but also to more effective and efficient diagnostics. The Radboud university medical center program standardizes this approach for wider application.

18.2 Outcomes of Health Care The efforts of curative health care have always been focused on outcomes, but permanent monitoring of them has taken a long time [14]. Partly thanks to the value-­ based health care concept of Porter and Teisberg, this has changed. We now consider

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routine measurement of results to be a given. At least in theory and policy—there is more resistance in practice. The organizational answer to this starts with the interdisciplinary team that wants to know its outcomes. This appears to be the smallest problem in practice: as soon as health-care professionals unite around a patient group and take responsibility for the joint health-care process, this interest arises spontaneously. What the team then has to go through is the joint choice of an appropriate set of outcomes and outcome measures [15]. This process can also be prepared at the hospital level, for example, with phasing and support. But the most important organizational contribution comes after that: building bridges to parties who must make the collecting of  outcome information possible and ensure its use, first and foremost the colleagues in the ICT departments, who are invaluable here. This must therefore be an integral part of the solution package that an organization has available. We will go into that further in Sect. 18.3. Two developments place additional demands on the organization of outcome information. The first is that we do not limit ourselves to immediate outcomes, as we did before with complications and hospital mortality. For example, 5-year survival after receiving cancer treatment. The second concerns the use of patient-­ reported outcomes, which are important because the value of care shows  if, for example, you can walk pain-free again 6  months after the orthopedic procedure. Both require the development or access to sources of information outside the hospital.

18.2.1 Patient-Reported Outcomes Measured Routinely Combining patient-reported outcome information for different clinical profiles requires an effective approach at the hospital level. At our invitational conference “Generic patient-reported outcome measures—The way to go?”, at the ICHOM conference on May 2, 2019, in Rotterdam, good options were presented for this. Sophia de Rooij, Sjaak Bloem, and Caroline Terwee discussed good widely applicable instruments [16, 17] to measure patient-reported outcomes, and José Valderas, Jan Hazelzet, and Philip van der Wees made it plausible that a lot can be expected of them, as we do not have to reinvent the wheel for every clinical profile. Proposals for generic sets from ICHOM appeared a little later. ICHOM then attempts to incorporate these into the sets for each clinical profile. Pain, fatigue, symptoms of depression, and other health aspects relevant to multiple diseases are measured in these generic sets in a way that can be applied regardless of the disease. From an organizational point of view, the advantage is that fewer different instruments need to be implemented and maintained, it is clearer for health-care professionals, and patients with multimorbidity do not have to fill in multiple questionnaires about the same thing. Caroline Terwee illustrated the possibilities using the well-known conceptual model of patient outcomes by Wilson and Cleary (shown in Fig.  18.1): generic PROMs can be used to assess quality of life (on the right-hand side in the figure),

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Characteristics of the individual

Biological and physiological variables

Perceived symptoms

Functional status

General health perceptions

Overall quality of life

Characteristics of the environment

Fig. 18.1  The conceptual model of patient outcomes by Wilson and Cleary [18]

which is a general concept in itself. In addition, general health perception and functional status can largely be measured with generic instruments. Finally, this also applies to percieved symptoms (fourth from the right in the model) that are similar between diseases, such as pain and fatigue. This explanation also makes it clear that generic outcome sets are not sufficient. An IBD team adapts the care to specific symptoms that may signal an inflammation. And a cleft lip and palate team wants to know how the patient rates his their face. Computer adaptive testing, as is possible with PROMIS, can also contribute to efficient patient questioning: a reliable score is determined with a more limited number of questions. Amsterdam university medical center has announced that it will test this technique in its waardetuinen, testing areas for value-based care. The expectation is that a lot can be learned—also by others—for the routine application of this technique. Finally, for the efficient organization of outcome information, we look at the opportunities at the national level. With the many well-considered outcome sets for each clinical profile and the prospect that ICHOM will continue to provide new areas with sets, there is in fact a repertoire available from which to choose. It is wise to do so without reinvesting in the development of something else, all the more so since leading health-care professionals from university medical centers and hospitals have contributed to the ICHOM sets and their potential has been demonstrated (see, for example, the chapter of Alies Depla et al. (see Chap. 16) [19]). It also paves the way for comparing outcomes—although more will be needed, including a case-mix adjustment based on socioeconomic status, as Arvind Oemrawsingh et al. showed last year [20]. After all, quality of care is not the only factor influencing health. In short, there are good opportunities to efficiently assess patient-reported outcomes. A close connection to matters that are already available and agreed nationally and internationally is an important one.

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18.2.2 Using Outcomes Before we discuss the necessary provision of information, we will look at the use that is made of outcome information in greater detail. We distinguish the use in direct health care and in learning and improvement. For shared decision-making in health care, outcome information is very promising: insight into the expected outcomes of various treatment options can improve the quality of the assessment—although a lot of work still needs to be done on presentation and conversation [21, 22]. The NFU-consortium program Beslist Samen!2 comprises the development and implementation work of ten university medical centers and hospitals in this field. This work, led by Dirk Ubbing, confirms patients’ need for outcome information, and also shows the limited possibilities to meet that need. This is because treatment providers currently have to rely mainly on outcome data from available literature. We would be better able to help in the decision-­making about the treatment with outcome information from current health care and even more so with outcomes that can be expected in the specific situation of the patient. In the chapter by Barbara van Leeuwen and Maarten van der Laan, we see how enormously this can influence the choice of treatment (see Chap. 4) [23]. Another application “in the consultation room” is about the current health needs of the patient. View of the outcome achieved so far makes it possible to optimize further treatment. We see this in the Turner team in Erasmus university medical center (see Chap. 11) [24] and in the MS team in Amsterdam university medical center [25]: the disciplines that the patient sees during an outpatient clinic consultation are chosen on the basis of information from the PROM questionnaire, which the patient completes prior to the consultation. Others use the monitoring of clinical and/or patient-­reported outcomes that take place at home to determine whether there is a need for an outpatient clinic consultation and, above all, when. This results in the right care at the right time, which may lead to good stabilization in chronically ill patients, as Marieke Pierik et al. show in their Chap. 12 [26]. Even personalized advice, through an algorithm adapted to the patient’s current situation, has an impact on outcomes—Judith Huirne and colleagues show this in their Chap. 9 [27]. Both of the latter improvements demonstrably increased the efficiency of health care: better outcomes at lower costs. In the cycles of learning and improvement, the team uses outcome information for evaluation: have we achieved the outcomes we set out to achieve? Ambitions and actions for further improvement are derived from this [28]. Up-to-date and reliable information is necessary here as well. Annual information from registrations does not prompt action, but data from this week are inescapable. This is particularly true if the team itself recognizes the reliability, which can be achieved with its own commitment and involvement in the derivation process, and its training  for quality improvement. Comparing one’s own outcomes with those of other teams and centers is a valuable addition to this process.

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18.3 Providing Information Relevant information about the outcomes of health care is not just readily available. This requires a lot of organizing. Together with program leaders of value-based care and CMIOs from the university medical centers, we have defined what is needed for an adequate provision of information. On overview of this can be found in Fig. 18.2. Source systems (such as the EHR) must be designed to ensure that clinical data are recorded unambiguously. The state-of-the-art consists of the principles and information building blocks [29] of Registration at the point of care [30]. This approach can not only be used in the context of value-based care but also enables multiple use of clinical data. For sufficient ease of use, the screens of the EHR must also be designed in such a way that data can be entered as soon as they are created or become available and are visible. After all, a collection table placed in another tab is more easily overlooked or insufficiently filled. The collection of outcome and experience data (PROMs and PREMs) from patients should preferably take place via the portal where patients can also view their medical file. In addition to providing a recognizable environment for the patient, this also allows for timely alerts so that the data is available at the right time. In this way, the portal becomes more relevant to the patient as well. Furthermore, it is important that the data from the primary systems also become available for use. This  links data from different sources at the patient level and makes it accessible for use by team members and other health-care providers involved with the patient—thus avoiding to ask the patient PROM questions twice. The necessary architecture also provides an environment for analysis, where automated algorithms enrich the data. The idea of incorporating all this into the EHR system has now been widely abandoned. These functionalities must be housed separately in a data platform.

Determine and collect Clinical data

Architecture Connect and enable access

PROMs and PREMs

Data analysis and algorithms

Enable access Consultation room dashboard (N=1) Discover and improve dashboard

Agreements and governance on data sets and models

Fig. 18.2  Core elements of providing information for personalized health care

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Making the necessary connections requires more than just the right technique. Frits van Merode has already pointed out that the IT arrangement reflects the old organization and therefore contributes to maintaining the boundaries that we want to overcome [31]. A similar boundary also exists between data and clinical work. The introduction of data science can help overcome this and allows us to build the ideal of a learning health-care system together [32]. This provides hints for innovating the role of IT in value creation in health care. The dashboards complete the provision of information. The relevant outcome data are then routinely presented for use in the consultation room and in learning and improvement activities [33]. Particularly in the consultation room, it is important that the matters that require attention stand out immediately: this helps to efficiently focus the health-care process on what matters most to the patient. Patients themselves like to see their progress in the consulting room: are they doing better now than before? The importance of governance with regard to providing information has already been discussed in this chapter. We would add that this should fit in with the dynamics that we are trying to organize in value-based care. As clinicians are actively working on the quality of care, there is a desire to not only improve care but also adapt registration and monitor other data too. This needs to be facilitated liberally. Intermountain Healthcare does this with a software tool that allows members of the clinical team to create new input fields in the EHR and give the data a permanent place in the databases. In addition to ease of use, this tool ensures that these are properly embedded into the systems without the intervention of IT colleagues. As a result, these adjustments in Intermountain now take half a day, whereas it used to take months [34].

18.3.1 Accountability for Improvement In the program Sturen op Kwaliteit (Quality based Governance) that the NFU-­ consortium carried out from 2015 to 2019 with a subsidy from ZonMw, the central question was how hospital management and the teams promote the quality of care together. ln the startup phase we discovered that if executive boards already had information about the quality of care, this was based on external indicators and reporting obligations. However, in the eyes of health-care professionals this information lacked relevance. They themselves claimed to measure quality against completely different aspects, and we asked them to detail this further. In many projects, health-care professionals have subsequently worked with patients on the selection of indicator sets that they both consider to be meaningful. By implementing these sets and sharing the results with the hospital management, a good discussion about the delivered quality and  room or the need for improvement became possible [35]. This development has contributed to a shift toward outcome information. Wherever possible, patient-reported results were included [36, 37]. This made the program a pioneer in value-based care. It also made clear how stimulating

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the availability of quality information, selected based on relevance, is for improving care. In an Actiekaart Sturen op Kwaliteit (Action Card Navigating toward Quality), directors agreed to create freedom for selecting indicators and in turn, for further efforts on health-care improvement [38]. At the invitation for directors, which we organized at the beginning of 2020, there was also broad support from insurers, the inspectorate, and the government to continue along this path and a great deal of willingness to work together. Personalized care shows real potential for efficiency gains. In a number of practices, as we have seen, it has been shown that more is achieved for the same money or less. However, direct and indirect costs are rarely included in routine feedback to teams. This can be improved in collaboration with the financial field. This collaboration can be of great significance. It is precisely a refined insight into care processes that can help unite perspectives and course  of patients, clinicians, and financials. An interdisciplinary team is therefore not complete without a financial colleague. In this chapter, we have looked at where to take action to facilitate and stimulate improvements in the quality of care. The common denominator is connection— between specialisms and disciplines in disease-oriented teams, between the primary process (care) and supporting processes (in particular ICT), between the work force and management and between hospital and stakeholders—aimed at optimal value creation for the patient. In our experience and that of colleagues in Sweden [39], this is an exciting alternative to the growing discomfort from fragmentation in hospital organizations, which has been a concern [40] for decades, and it is necessary to further flesh out personalized care.

References 1. Batalden PB, Davidoff F. What is “quality improvement” and how can it transform healthcare? Qual Saf Health Care. 2007;16(1):2–3. https://doi.org/10.1136/qshc.2006.022046. 2. Porter MTE, Teisberg Olmsted E. Redefining health care: creating value-based competition on results. Boston: Harvard Business School Press; 2006. 3. Veenstra GL, Ahaus K, Welker GA, et  al. Rethinking clinical governance: healthcare professionals’ views: a Delphi study. BMJ Open. 2017;7:e012591. https://doi.org/10.1136/ bmjopen-­2016-­012591. 4. Fluit L, Verduijn M, Peerdeman S. Interprofessional Learning and Working. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 5. https://nfukwaliteit.nl/programmas/onderwijs-in-kwaliteit/advanced-training-programwaardegedreven-zorg. 6. https://www.sturenopkwaliteit.nl/nieuws/internationale-­uitwisseling-­programma-­sturen-­op-­ kwaliteit-­wat-­kunnen-­we-­ler/. 7. Deneckere S, Euwema M, Lodewijckx C, et al. Better interdisciplinary teamwork, higher level of organized care, and lower risk of burnout in acute health care teams using care pathways: a cluster randomized controlled trial. Med Care. 2013;51(1):99–107. https://doi.org/10.1097/ MLR.0b013e3182763312. 8. Seys D, Bruyneel L, Deneckere S, et al. Better organized care via care pathways: a multicenter study. PLoS One. 2017;12(7):e0180398. https://doi.org/10.1371/journal.pone.0180398.

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9. Seys D, Deneckere S, Lodewijckx C, et al. Impact of care pathway implementation on interdisciplinary teamwork: an international cluster randomized controlled trial. J Interprof Care. 2019:1–9. https://doi.org/10.1080/13561820.2019.1634016. 10. NFU.  Bouwstenen voor werken aan waardegedreven zorg. https://nfukwaliteit.nl/pdf/ Bouwstenen_voor_werken_aan_waardegedreven_zorg.pdf. 11. https://nkp.be/. 12. Van Harten WH.  Turning teams and pathways into integrated practice units: appear ance characteristics and added value. Int J Care Coord. 2018;21(4):113–6. https://doi. org/10.1177/2053434518816529. 13. Vanhaecht K, De Witte K, Panella M, et al. Do pathways lead to better organized care processes? J Eval Clin Pract. 2009;15(5):782–8. https://doi.org/10.1111/j.1365-­2753.2008. 01068.x. 14. Kerkkamp H, Poelsgeest R, Van Weert N. CIO in de zorg: Kwaliteit proactief bewaken. CIO Magazine. 2010;6:86–90. https://issuu.com/kadappa/docs/cio_6_compleet/86. 15. Van der Wees PJ, Verkerk EW, Verbiest MEA, et al. Development of a framework with tools to support the selection and implementation of patient-reported outcome measures. J Patient Rep Outcomes. 2019;3(1):75. https://doi.org/10.1186/s41687-­019-­0171-­9. 16. Bloem S. Gepersonaliseerde zorg, de juiste richting. Oratie Nyenrode; 2012. 17. Roorda LD, Crins MH, Terwee CB. Clinimetrics: Patient-Reported Outcomes Measurement Information System (PROMIS®). J Physiother. 2019;65(2):110. https://doi.org/10.1016/j. jphys.2018.11.009. 18. Wilson IB, Cleary PD.  Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA. 1995;273(1):59–65. https://doi.org/10.1001/ jama.1995.03520250075037. 19. Depla A, Laureij L, Ernst-Smelt H. Working with Outcomes in Perinatal Care. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 20. Oemrawsingh A, Van Leeuwen N, Venema E, et al. Value-based healthcare in ischemic stroke care: case-mix adjustment models for clinical and patient-reported outcomes. BMC Med Res Methodol. 2019;19(1):229. https://doi.org/10.1186/s12874-­019-­0864-­z. 21. Damman OC, Verbiest MEA, Vonk SI, et al. Using PROMs during routine medical consultations: the perspectives of people with Parkinson’s disease and their health professionals. Health Expect. 2019;22(5):939–51. https://doi.org/10.1111/hex.12899. 22. Damman OC, Jani A, de Jong BA, et al. The use of PROMs and shared decision-making in medical encounters with patients: an opportunity to deliver value-based health care to patients. J Eval Clin Pract. 2020;26(2):524–40. https://doi.org/10.1111/jep.13321. 23. van Leeuwen B, van der Laan M. Treatment Decisions Based on Treatment Goals of Oncogeriatric Patients. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 24. Dykgraaf R, van den Hoven A, Mijnarends-Akkermans H. Value-Based Health-Care Pathway for Patients with Turner Syndrome. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 25. 8x2 verbeterverhalen. Eén en één is meer dan twee. NFU-consortium 2019. https://nfukwaliteit.nl/pdf/NFU_8x2_verbeterverhalen_14-­Amsterdam_UMC-­Teamtraining.pdf. 26. Pierik MJ, Markus T, Dijkstra G. SMART-IBD: Better Health Care from the Patient’s Perspective. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Value-based Healthcare Frontrunners from The Netherlands. Springer; 2021. 27. Huirne J, Bouwsma E, Anema H. E-Health Application IkHerstel: A Textbook Example of Value-Based Care. In: Van Weert N, Hazelzet J, editors. Personalized Specialty Care - Valuebased Healthcare Frontrunners from The Netherlands. Springer; 2021. 28. Bohmer RM. The hard work of health care transformation. N Engl J Med. 2016;375(8):709–11. 29. https://zibs.nl/wiki/ZIB_Hoofdpagina. 30. https://www.registratieaandebron.nl/over-­het-­programma.

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Interprofessional Learning and Working

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Lia Fluit, Marion Verduijn, and Saskia Peerdeman

Abstract

For university medical centers (UMCs), interprofessional collaboration is a key element in working on value-based health care (Position paper Waardegedreven Zorg, NFU. https://nfukwaliteit.nl/pdf/NFU-­Position_Paper_Waardegedreven_ Zorg.pdf, 2019). Every health-care provider that contributes to a patient’s care is part of the interprofessional team. Together they bear the responsibility for the entire care process, and for the outcomes and experiences of the patient. As a team, they learn to continuously improve the care of their patients. In this contribution, we highlight aspects of interprofessional learning and working in teams, as a condition for providing optimally integrated care to patients. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Interprofessional collaboration · Team training

L. Fluit (*) Radboudumc Health Academy, Radboud University Medical Center Nijmegen, Nijmegen, The Netherlands e-mail: [email protected] M. Verduijn Quality and Patient Safety, Leiden University Medical Center, Leiden, The Netherlands e-mail: [email protected] S. Peerdeman Department of Neurosurgery, Amsterdam University Medical Centre, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_19

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Care for patients has become more complex—especially in UMCs—over the years. Increasingly specialized doctors, nurses, and other health-care providers provide specialist care. Therefore, in practice, several health-care providers are almost always involved with each patient. Multidisciplinary consultation was initially focused primarily on coordinating the insights and treatment plans between doctors with different specializations. With other care professionals involved, such as nursing specialists joining in, it now has an interprofessional character. The need for good interprofessional collaboration is further reinforced by transitions in health care, such as the shift of care responsibilities from medical specialists to nurse practitioners or general practitioners, and the development of network care.

19.1 Interprofessional Collaboration Interprofessional collaboration occurs when two or more professionals (such as doctors, nurses, physiotherapists, speech therapists) work together in providing care to a patient and in improving the outcomes of care. These can be fixed teams in which health-care professionals work together for a long time and as such, know each other well, but much more often these are teams in ever-changing compositions. For example, complex health-care issues often involve several professionals who do not know each other that well or sometimes not at all. We see this trend even more frequently in large organizations. This requires not only good cooperation competencies but also a clear picture of one’s own tasks and authorizations and those of the others in the health-care process. It is also necessary to communicate about this and make agreements. As a result, a new language is needed to understand each other and work on the basis of one vision or a shared vision of the shared task, at the level of an individual patient on the basis of one shared care plan.

19.2 Boundary Crossing Interprofessional collaboration is usually not automatically successful. It demands careful attention, during the work itself (as a form of lifelong learning) and in the various care training programs. The “boundary crossing” theory may offer some insight and direction in this process [1]. Within boundary crossing, four learning mechanisms are distinguished that contribute to learning with, from, and about each other. First of all, it is important to learn what everyone’s identity is, where boundaries of identity overlap, and where it is useful and necessary for identities to coexist (“legitimizing coexistence”). The second learning mechanism is learning about working together in order to organize and coordinate communicating to the other parties, and how to best eliminate obstacles when working together with others, etc. A third learning mechanism is reflection: exchanging and understanding each other’s perspective (“perspective making and taking”). Finally, boundary crossing speaks of transformative learning: the

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actual change of varying positions and practices. By working together and exchanging perspectives, one realizes that there are common issues. This creates room for the development of shared visions and new collaboration practices in order to achieve the best outcomes for patients. This is more likely to occur in teams that already work together on a regular basis, and where team members know each other and feel comfortable enough to share their visions. However, once interprofessional collaboration becomes “business as usual,” ad hoc teams will also come up with a shared vision and approach more easily. For example, at the Radboud university medical center pain center, it was customary for a patient to speak one by one to the various health-care professionals one morning and then talk to the anesthetist at the end. Very often the patient was unable to tell the anesthetist what was agreed or what the treatment plan was. That is why the pain center started a new type of consultation with a kind of overlapping structure, where a health-care professional would always join the last part of the consultation with the previous professional. As a result, the health-care professionals had a much better idea of what the arrangements were by speaking with each other, the care was much better coordinated, and the patient was better informed and above all more involved in the whole care plan. Another example is the MS clinic of the Amsterdam UMC where each patient speaks to a team of health-care providers during their annual consultation, formed on the basis of the prior “patient-reported outcome measures” (PROMs) [2]. There are also transmural initiatives, such as the Consultation Project in which the goal is for residents in general practice and internal medicine to learn from each other in a way that is directly in line with their daily work [3]. From the patient’s file, a general practice resident digitally asks a (well-formulated) question to an internal medicine resident; data on a patient’s history, medication, and laboratory results are automatically included. The internal medicine resident answers the question, which turns out not to be easy without having seen the patient himself. This includes questions like: Do you have enough information to answer the question? How do you feel about the guidelines in primary health care? If they want to provide feedback or need further information, the residents call each other. This feeds into their education (which they participate in together) and prepares them to consult with each other about preconceived notions and expectations as well as share consultation outcomes with each other.

19.3 Formal and Informal Learning Learning to work together can be done through education, further training activities, and conferences in order to raise awareness and increase knowledge and skills. However, this formal learning is only a small part of the learning process of current and future health-care professionals. Moreover, we know that this form of learning does not always lead to different behaviors in the workplace because the transfer of learned insights to that workplace does not happen on its own. It is almost always necessary to translate what has been learned to one’s own practice, which calls for

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the necessary time to put this into action and thus really internalize interprofessional collaboration. Health-care professionals learn most from and during practice, while treating a patient, by having a back-and-forth with a colleague, or observing a coworker or supervisor. This learning method is called informal learning. Informal learning is integrated into daily routines, and connected to learning from others. [4] It takes place at different times, planned or not planned, wanted or unintentional, conscious or unconscious. Learning activities like these that take place in practice spontaneously are learning through experience (through experience and immersion in an environment and by one’s own actions) and learning through social interaction (for example, through everyday conversation, exchange of information, collaboration, or problem and conflict handling). The various forms of informal learning each have their strengths and weaknesses. A big advantage of informal learning in the workplace is that it is easy because it is directly linked to action: there is no issue of transfer. This makes it easy to adopt procedures as they are carried out in practice. However, this form of learning also has recurring problems. For example, interns often have to quickly “unlearn” things they learned in their study program (“here we do it this way”). Colleagues often consciously or unconsciously take on behaviors from others, including undesirable ones: they get used to an unsafe learning environment in which asking questions or asking for or giving feedback is not common, or notice that there is hardly any time to reflect together on the work and how they can learn from it. This brings us to important preconditions for interprofessional learning and working: a safe team climate and sufficient time for learning.

19.4 A Safe Team Climate Psychological safety—the extent to which employees feel comfortable speaking out and asking for help [5]—in teams and organizations is an important condition for learning at work, including health care. Psychological safety is about overcoming interpersonal risks related to sharing different insights, admitting errors, or discussing the care itself, in turn creating freedom to learn. In professional health-care culture, hierarchy traditionally plays an important role: doctors enjoy a greater professional reputation than nurses, as well as hyper specialists compared to generalists, and experienced doctors compared to residents. This can hinder a safe team atmosphere, especially in interprofessional teams, creating a barrier that prevents interprofessional learning and working. This manifests itself as “dangerous silences” in the workplace: employees who do not express their doubts because of the risk of unpleasant reactions, often with an impact on patient safety [6]. They may not share ideas for improvement either. For example, colleagues at Utrecht University Medical Center have shown that the trade-offs “Is it safe to speak out?” and “Is it likely that this will be effective?” are important points for residents when considering whether or not to suggest and discuss opportunities for quality improvement [7].

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Team training based on the concept of Crew Resource Management (known from aviation) is a proven approach within the acute care setting that focuses on team members speaking openly. This simulation training focuses on making the most of all available resources to promote safety and increase efficiency, including the team members themselves with each of their specific knowledge, experience, perception, and intuition [8]. Psychological safety is not synonymous with being nice. Rather, it is honest feedback that creates safety. An example of this is the feedback dialogs between residents and their supervisors in the context of their training. Residents often find it difficult to give their supervisor feedback and are afraid that their training will be compromised if they do so honestly. Supervisors frequently feel uneasy at the thought of receiving feedback as well. However, honest feedback from residents makes it safer for them. In order to enable the feedback dialog, Radboud university medical center has developed the EFFECT system in which preconditions are created in order to provide feedback as fairly as possible in a hierarchically unequal situation [9, 10]. Important research-based conditions are created to achieve this culture of speaking up or “upward feedback”: an unambiguous method of feedback and dialog, clear agreements with all involved, well-defined criteria, a moderator who supervises the feedback discussions, and a team of supervisors that is positive about receiving feedback from residents. Residents indicate that giving feedback to their supervisor after the training becomes easier, and that the hierarchical distance decreases.

19.5 Facilitating Interprofessional Learning and Working Professionals regularly indicate that there is not enough time to revisit and consider their work together with other health-care professionals, share work experiences with them, give each other feedback, and reflect critically. This applies to doctors, to nurses, and between doctors and nurses, and other health-care providers: the interprofessional care team. This will impede the full and effective achievement of lifelong learning and interprofessional learning and working. And that stands in the way of the improvement and innovation of care. Facilitating reflection is not only a role of the team leader because at UMCs, many patients with multiple disorders are treated in complex situations by ad hoc teams or acute care teams. It also requires the organization to allow this to be part of the advocated work method. Team leaders and department heads play an important role in organizing and facilitating moments for interprofessional reflection as an integrated part of the work. These are fixed times to talk about the common vision on care and to reflect on the cooperation. Examples are the weekly team reflection and the monthly team discussion for the interprofessional team that provides geriatric care at Radboud university medical center (see Box 19.1).

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Box 19.1 Interprofessional Training in Acute, Complex, and Regular Situations (Amsterdam UMC)

TeAMS (Training and Assessment Medical Specialists) is Amsterdam UMC’s innovative, interprofessional training program. Each medical specialist participates in these training courses on a regular basis together with at least two other medical disciplines and with professionals who are part of the medical team. No matter how good you are at your profession, each and every person in the team plays an essential role when caring for an individual patient. Three situations are the foundation of the training courses: acute situations, complex situations that have a major impact on cooperation, and regular situations such as structured, multidisciplinary discussions. The training for acute situations is a simulation, and it is in alignment with the fact that the roles (such as anesthetist, internist, nursing expert) are familiar, but the people with this role in the team vary. The training for complex situations (in which both the roles and individuals involved are often not known in advance) focuses on understanding different communication styles in order to support the discussions and decision-making in complex situations. Structured, multidisciplinary discussion usually involves the same roles and professionals. The training focuses here on the arrangement of the decision-making process and communication, also covering aspects such as safety and culture. In order to shape the training courses in the ever-changing context of the work, TeAMS has three basic principles: train teams that work together in daily practice; train for the situations they encounter in daily practice, and train for non-technical team skills that they can apply the next day. This is appreciated by the participants. Read more in: “Eén en één is meer dan twee” (one plus one equals more than two) [11]. This demands a vision that supports interprofessional learning and working from the organization. This can be reflected in the scheduling (in care and education/ training) and housing. Housing concerns the physical proximity to the care components for which an interprofessional team is responsible. For example, the care for patients with chronic kidney failure in the VUmc location of Amsterdam UMC was organized in the same part of the building. With the relocation of this care to the AMC location, physical proximity has been decreased. In order to overcome the possible impact of this change on the interprofessional teamwork of the relevant care team, the TeAMS program (see Box 19.2) provides training in team skills for this new context. Box 19.2 The Geriatric Care Team Is Committed to Strong Interprofessional Collaboration (Radboud University Medical Center)

Since 2015, strengthening interprofessional collaboration has been a central theme in the Geriatrics department of Radboud university medical center.

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This theme came from the staff members themselves, in the light of the ambition to teach health-care providers-in-training to work interprofessionally. “There was a common realization that this first of all requires our team of nurses, physiotherapists, nutrition assistants, secretaries, and doctors to effectively work together interprofessionally themselves,” says Dieneke van Asselt, clinical geriatrician and trainer. Under the leadership of an interprofessional working group, there has been real improvement in the area of interprofessional teamwork. The day and evening shifts are now started with everyone together. This involves the team looking over the tasks at hand, and even discussing who, during the tightest times, will help whom to get the work done, a bit of “transprofessional” cooperation. Every Wednesday afternoon there is a moment of team reflection, and each month, a nurse leads an interprofessional team discussion. This leads to concrete improvement activities, such as the decision that in situations of high health-care demand, the nurse, rather than the doctor, will take the lead in determining the patient capacity. There was already a shared coffee room in the department, and lunch was already a shared activity, but due to all of team interventions there is now good interprofessional collaboration. For example, there are no more domain discussions, and there is respect for each other’s work. Crises are prevented by the team looking ahead and reflecting structurally. At the heart of this whole development are feedback interviews, questioning among the team members, role clarification using the RACI model (and a comprehensive joint discussion on it). The success factors are the stability of the working group, the working group members setting an example, strong leadership, and continuous involvement of the team. Keeping the focus on the higher goal of cooperation is essential as well: providing good care to patients. In the meantime, the team is training nursing, physiotherapy, and medical students with the help of a specially developed workplace learning module for how to achieve the highest level of interprofessional collaboration in the care of vulnerable elderly people. They feel this is quite valuable because that did not receive enough attention in their degree program. And it is the students who formulate a weekly goal for the entire geriatric care team. The Executive Board and management ask that interprofessional teamwork be kept in mind during patient care, that it be discussed, and that it be used as a basis for adapting practices. The Culture of Care Barometer has been selected by researchers from Erasmus MC, Radboud university medical center, and other institutions as a valid and reliable instrument for measuring the experiences of health-care professionals with their work environment and in turn, aspects of teamwork [12]. It rarely focuses on interprofessional learning in the workplace, and as a result it is a relevant topic for consideration in the continued development of the instrument.

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19.6 Working Together with the Patient Care that adds the most value to the patient requires an open dialog and good cooperation with the patient and their loved ones. The form of this collaboration is not the same for all patients and can also change during the course of the disease. For example, patients can be a full part of the interprofessional team, and actively participate in this, such as chronically ill patients. For other patients (and groups of patients), a nurse often relays the patients’ story and wishes, based on intensive contact with them (see the case studies of the elder oncology patient at the UMCG in Chap. 4). The starting point is that the patient’s perspective is always actively taken into account so that the interprofessional team provides person-centered care.

References 1. Akkerman S, Bakker A.  Boundary crossing and boundary objects. Rev Educ Res. 2011;81(2):132–69. 2. 8x2 verbeterverhalen. Elke MS-patiënt zijn eigen spreekuurteam. NFU-consortium. 2019. https://nfukwaliteit.nl/pdf/NFU_8x2_verbeterverhalen_3-­Amsterdam_UMC-­ Waardegedreven_MS-­zorg.pdf. 3. Janssen M, Sagasser MH, Laro EAM, de Graaf J, Scherpbier-de Haan ND. Learning intraprofessional collaboration by participating in a consultation programme: what and how did primary and secondary care trainees learn? BMC Med Educ. 2017;17:125. 4. Marsick VJ, Volpe M.  The nature and need for informal learning. Adv Dev Hum Resour. 1999;1(3):1–9. 5. Edmondson AC, et al. Understanding psychological safety in health care and education organizations: a comparative perspective. Res Hum Dev. 2016;13:65–83. 6. Martinez W, et  al. Speaking up about traditional and professionalism-related patient safety threats: a national survey of interns and residents. BMJ Qual Saf. 2017;26:869–80. 7. Voogt JJ, et al. Why medical residents do (and don’t) speak up about organizational barriers and opportunities to improve the quality of care. Acad Med. 2020;95(4):574–81. 8. Whitepaper Samen zorgen voor betere zorg. Betere interprofessionele samenwerking door teamtraining, NFU-consortium. 2018. https://nfukwaliteit.nl/pdf/180330_NFU-­consortium_ Kwaliteit_van_Zorg_-­_Whitepaper_Teamsamenwerking_v10.pdf. 9. Fluit CRMG.  Evaluation and feedback for effective clinical teaching. Thesis, Radboud University Nijmegen, Meppel, Nederland, Ten Brink; 2013. 10. Fluit CRMG, Bolhuis S, Klaassen T, de Visser M, Grol R, Laan R, Wensing M.  Residents provide feedback to their clinical teachers: reflection through dialogue. Med Teach. 2013;35:e1485–92. 11. 8x2 verbeterverhalen. Eén en één is meer dan twee. NFU-consortium. 2019. https://nfukwaliteit.nl/pdf/NFU_8x2_verbeterverhalen_14-­Amsterdam_UMC-­Teamtraining.pdf. 12. Maassen S, Van Oostveen CJ, Weggelaar AM, Brekelmans G, Vermeulen H. Interprofessionele Teamsamenwerking: SUPPORTT project. NFU-consortium. 2018. https://nfukwaliteit.nl/pdf/ SoK_T1_Teamsamenwerking_SUPPORTT_Definitieve_Eindrapportage_180406.pdf.

Using Regional Funding to Achieve Transparent and Personalized Health Care

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Bart Noort, Mart van de Laar, and Kees Ahaus

Abstract

In this chapter we discuss funding issues from a quality perspective at different levels of health care: the level of the patient and health care provider, the health ­care organization, and the health care network in the region. We will outline a number of issues that health care professionals as well as patients encounter in daily practice. Finally, we will argue how regional responsibility for the health and health care costs of the population can contribute to transparency in care outcomes and quality-enhancing funding. Keywords

Value-based Health Care · Personalized Care · Quality of Care · Health care purchasing · Regionalized care · Payment models · Financial incentives

From the perspective of health care quality, a lot of attention is paid to the question of what valuable health care is, how we can best measure it, and how we give value a place in the consultation room. There is also growing awareness that we need to

B. Noort Department of Operations, University of Groningen, Groningen, The Netherlands M. van de Laar Department of BMS, University of Twente, Enschede, The Netherlands e-mail: [email protected] K. Ahaus (*) Department of Health Services Management & Organisation, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0_20

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organize health care more from the perspective of the patient or citizen and less from the perspective of the health care provider or health care institution. This means that patients and health care providers have “the right conversation” in the consultation room. That conversation can provide clarity about what is important to a patient in their life and how health care can contribute to these values. Good communication between health care providers and patients also provides the necessary understanding of possible outcomes and limitations of a treatment. This facilitates adequate, joint decision-making. In addition, the health care provider and the patient pay attention to the patient’s own role in their treatment. After all, therapy compliance and healthy behavior strongly influence treatment outcomes. Achieving this personalized health care requires insight into the structure, process, and outcomes of care. A good structure means well-equipped staff, with sufficient resources for treatment and diagnostics. The care process is established by means of treatment guidelines and agreements for a good division of tasks and collaboration. Particularly in the area of care outcomes, supportive care funding is an essential precondition, and transparency in care outcomes is needed to encourage health care providers to continue to improve these outcomes.

20.1 Funding Issues We distinguish between three levels of funding issues in order to achieve this value-­ based, personalized care: in the relationship between patient and health care provider, in the organization of care, and in collaboration in the region.

20.1.1 Patient and Health Care Provider As a patient, you want access to the best health care as quickly as possible. In the Netherlands, citizens are obliged to purchase private health care insurance for this purpose so that they can actually receive the diagnostic procedures and treatments established in the basic package. The patient has an important role in indicating which treatment they want to receive. It is well known that good communication and, in turn, trust between health care providers and patients can contribute to better treatment choices of patients with regard to health care outcomes and the cost of health care. However, due to their limited knowledge and information, patients always remain highly dependent on the expertise of the health care provider. Health care providers therefore have a duty to, within the set framework of treatments, advise which treatment is necessary and most suitable. However, the current financing of health care—payment per activity (or fee-for-service)—mainly stimulates the availability of care, and provides no incentive to make choices about what kind of health care is or is not necessary and to perform the chosen treatment in the best possible way [1–3]. Taking the time for a good discussion in the consultation room, and choosing a treatment together that suits the individual wishes of the patient are therefore not included in the current funding. Ideal funding stimulates

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health care that contributes as much as possible to the health of the individual patient at the lowest possible cost. Financial incentives should reward the latter instead of focusing on the supply of health care products on the basis of guidelines, routine, or agreed production targets.

20.1.2 The Health Care Organization Funding also plays an important role at the level of the health care institution in organizing health care in the best possible way and making choices about the kind of health care the institution provides. Health care institutions are funded per health care product they supply in the form of diagnosis-related groups (DRGs). Within this system, health insurers have been agreeing on a lump sum and revenue limit for years. On the one hand, this means that there is an incentive to create the budget using sufficient production. On the other hand, there is limited leeway to provide more health care when needed. Although reimbursement of health care is based on specified care services, the current method of funding does not take into account differences in the effectiveness of various treatment options or the health care needs of individual patients. Health insurers are expected to stimulate quality improvement by choosing the best institution for each treatment. However, in practice, this market mechanism focuses mainly on waiting times and costs [4]. It seems unrealistic to expect insurers, health care institutions, and professionals to be able to make critical choices about the provision of health care when there is a lack of transparency about outcomes from both a biomedical and a patient perspective. These types of choices become even more difficult when they extend beyond the boundaries of the department. At many health care institutions, the distribution of resources between disciplines is a complicated puzzle: the historical budget supplemented by the importance of the health care institution and the department predominates. It is sometimes known within hospitals that certain treatments generate more income than others, which creates an incentive to focus on those treatments [2, 3]. By doing so, the provision of that type of treatment becomes a way of covering overhead costs for infrastructure and organization. This raises the question of whether the cost of treatments always corresponds to the value created and whether it is realistic to have to calculate the correct reimbursement for each individual patient. An alternative is to monitor the health gains for patients at the institutional or population level (including PROMs) and to distribute the payment (for diagnostics, treatment, and counselling) on that basis [5, 6].

20.1.3 The Region Similarly, funding for health care activities in the region creates tension between health insurers and care providers. This makes it difficult to achieve “the right care in the right place.” For example, it is known that COPD patients benefit from a

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timely, comprehensive diagnosis and treatment plan from the hospital and a good follow-up plan with the general practitioner and physiotherapist [7]. However, in practice there is a lot of variation, and it is difficult to coordinate primary and secondary health care [8]. The current separation of financial responsibility and production incentives is an obstacle to proper coordination and agreements between care providers. Bundled payment could strengthen this coordination and function as a control tool for the health care network. So far, however, it seems that tension is being created over which provider should perform which task within the bundle [9]. Bundled payment therefore also needs to be combined with joint financial responsibility. This may mean that we move from one bundle per patient to funding an entire population. Then the general practitioner, hospital, and physiotherapist—and perhaps even the health insurer and the municipality—are responsible for the health care budget, but above all for the patient’s health.

20.2 Better Funding Requires Transparency The above illustrates the problems with regard to funding and transparency we face in the Dutch health care sector. Table 20.1 summarizes the advantages and disadvantages of different funding models. The current method of funding, with an emphasis on payment per activity and budgets per institution, does not provide an incentive for coordination in order to make the right choices for patients and society as a whole. Experiments with rewards based on imperfect structure, process, and outcome indicators are interesting, but may be accompanied by registration load, risk selection, and mixed effects. For example, research shows that the motivation of professionals changes when their remuneration is directly linked to performance indicators [10]. Financial incentives can lead to health care providers focusing more on goals that, for instance, benefit the health care organization rather than society as a whole. At the moment, hospitals mainly focus on curative health care, such as through hospitalizations. Preventing future hospitalizations is not rewarded, and health care providers are thus not given the opportunity to do this in their work. Joint funding or population budgets offer solutions, but then the question of how tasks and costs are divided between health care providers remains. By providing a better overall picture of health gains through PROMs and clinical outcomes, we can work towards a system that rewards what matters to patients and society: health at the individual and population levels.

20.3 The Right System Incentives In order to achieve better incentives at the levels of the patient, health care provider, and region, better incentives are also needed at the level of the health care system. The current health care market holds health care providers individually responsible

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Table 20.1  Different types of funding and their advantages and disadvantages Type Funding based on lump sum budget and per capita Payment per activity

Pay for performance

Advantages Lowers transaction costs, continuity of income

Disadvantages Risks for waiting times

References [1, 2, 13]

Reduces waiting times, increases transparency of services Encourages quality improvement

Increases volume, offers no incentive for collaboration

[1–3, 14]

Shifts focus to performance instead of outcomes for the patient, incentivizes risk selection, leads to high administrative burden Incentivizes risk selection and health care avoidance, poses no risk for health care provider, presents a moral dilemma: extra payment for quality improvement Presents challenges when involving all stakeholders, risks high transaction costs and registration load, creates the need for transparency, presents challenges when taking comorbidity into account Challenging to involve all stakeholders

[10, 15–17]

Shared savings

Incentivizes efficiency and innovation

Bundled payment

Stimulates collaboration and a better division of tasks

Population funding

Stimulates collaboration and a better division of tasks

[11, 12]

[9, 18–21]

[12, 22]

for the care they organize and provide. This does not seem to stimulate the intended quality improvement and, on the contrary, constitutes a barrier to personalized care, i.e., the best possible care for the individual patient. The market mechanism with competition between health insurers in turn leads to a more short-term cost-oriented vision with limited influence on content. At the same time, health insurers should encourage health care providers to be transparent about care outcomes and to strive for an improvement in quality. The question is therefore whether the current market system can lead to transparency and an improvement in quality when there is no joint responsibility at the regional level for the euros we spend on the health of the population. There are already interesting examples at the regional level, where primary, secondary, and tertiary health care providers, together with health insurers, take responsibility for the health—including costs—of the population. Examples are the Accountable Care Organizations in the United States [11] and Gesundes Kinzigtal in Germany [12]. In the Netherlands, the national Hoofdlijnakkoorden (Framework Agreements) illustrate that joint financial responsibility facilitates a regional shift in health care. We can continue this movement when health insurers are given greater regional responsibility.

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To this end, it may not be necessary—or desirable—to drastically change the current health care system. For example, it can already help to give a large regional health insurer the lead in its region’s health care procurement. In order to do so, it is necessary to provide even more long-term prospects and for health insurers to encourage collaboration rather than competition. Only then will investing in better regional health care infrastructure, better collaboration, and division of tasks in health care chains become financially interesting for health insurers and health care providers in the long term. This will also provide an incentive to create transparency and agree on new forms of funding, which are a prerequisite for personalized care and a healthier population.

References 1. Barnum H, Kutzin J, Saxenian H. Incentives and provider payment methods. Int J Health Plann Manag. 1995;10(1):23–45. 2. Gosden T, Forland F, Kristiansen I, et al. Capitation, salary, fee-for-service and mixed systems of payment: effects on the behaviour of primary care physicians. Cochrane Database Syst Rev. 2000;(3):CD002215. 3. Nassiri A, Rochaix L. Revisiting physicians’ financial incentives in Quebec: a panel system approach. Health Econ. 2006;15(1):49–64. 4. Schut FT, van de Ven WP. Effects of purchaser competition in the Dutch health system: is the glass half full or half empty? Health Econ Policy Law. 2011;6(01):109–23. 5. van de Laar CJ, Voshaar MAO, Vonkeman HE. Cost-effectiveness of different treat-to-­target strategies in rheumatoid arthritis: results from the DREAM registry. BMC Rheumatol. 2019;3(1):16. 6. Vermeer M, Kievit W, Kuper HH, et al. Treating to the target of remission in early rheumatoid arthritis is cost-effective: results of the DREAM registry. BMC Musculoskelet Disord. 2013;14(1):350. 7. Halpin D. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease: the GOLD Science Committee report 2019; 2019. 8. Seys D, Bruyneel L, Decramer M, et al. An international study of adherence to guidelines for patients hospitalised with a COPD exacerbation. COPD. 2017;14(2):156–63. 9. Steenhuis S, Struijs JN, Koolman X, Ket JC, van der Hijden E. Unraveling the complexity in the design and implementation of bundled payments: a scoping review based framework of key elements from a payer’s perspective. Milbank Q. 2019;98(1):197–222. 10. Flodgren G, Eccles MP, Shepperd S, Scott A, Parmelli E, Beyer FR. An overview of reviews evaluating the effectiveness of financial incentives in changing healthcare professional behaviours and patient outcomes. Cochrane Database Syst Rev. 2011;(7):CD009255. 11. McWilliams JM, Chernew ME, Landon BE, Schwartz AL. Performance differences in year 1 of pioneer accountable care organizations. N Engl J Med. 2015;372(20):1927–36. 12. Hildebrandt H, Hermann C, Knittel R, Richter-Reichhelm M, Siegel A, Witzenrath W. Gesundes kinzigtal integrated care: improving population health by a shared health gain approach and a shared savings contract. Int J Integr Care. 2010;10:e046. 13. Quast T, Sappington DE, Shenkman E. Does the quality of care in Medicaid MCOs vary with the form of physician compensation? Health Econ. 2008;17(4):545–50. 14. Evans RG.  Supplier-induced demand: some empirical evidence and implications. In: The economics of health and medical care. Cham: Springer; 1974. p. 162–73. 15. Eijkenaar F, Emmert M, Scheppach M, Schöffski O. Effects of pay for performance in health care: a systematic review of systematic reviews. Health Policy. 2013;110(2–3):115–30.

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16. Kristensen SR, Meacock R, Turner AJ, et al. Long-term effect of hospital pay for performance on mortality in England. N Engl J Med. 2014;371(6):540–8. 17. Scott A, Sivey P, Ait Ouakrim D, et al. The effect of financial incentives on the quality of health care provided by primary care physicians. Cochrane Database Syst Rev. 2011;(9):CD008451. 18. Busse R, Stahl J. Integrated care experiences and outcomes in Germany, the Netherlands, and England. Health Aff (Millwood). 2014;33(9):1549–58. 19. de Bakker DH, Struijs JN, Baan CA, et al. Early results from adoption of bundled payment for diabetes care in the Netherlands show improvement in care coordination. Health Aff. 2012;31(2):426–33. 20. Struijs J, Kooistra M, Heijink R, Baan C. Toward integrating birth care by bundled payments in the Netherlands. Describing the model and expectations of key stakeholders. Int J Integr Care. 2017;17(5) 21. Porter ME, Kaplan RS. How to pay for health care. Harv Bus Rev. 2016;94(7–8):88–98. 22. James BC, Poulsen GP. The case for capitation. Harv Bus Rev. 2016;94(7–8):102–11, 134.

NFU Consortium Quality of Care

NFU consortium Quality of Care is a partnership of eight Dutch University Medical Centers. Together, the university medical centers in the NFU Consortium Quality of Care are working on improving patient outcomes and experiences in university medical center practice and in the region. To this end, we work in an interdisciplinary manner and in partnership with patients on sustainable personalized care and resilient health-care professionals.

Consortium Members Prof. M.C. (Martine) de Bruijne, MD, PhD, Professor of Social Medicine, in particular quality of care, Amsterdam UMC D.A. (Dave) Dongelmans, MD, PhD, Intensivist, Amsterdam UMC G.J. (Greetje) de Grooth, MD, PhD, MBA, Cardiologist, Head of Strategic Programs at LUMC Prof. J.A. (Jan) Hazelzet, MD, PhD, Pediatrician, Professor of Healthcare Quality and Outcomes, Erasmus MC until 1-1-2021 Prof. J.G. (Hans) van der Hoeven, MD, PhD, Intensivist, Professor of Intensive Care, Radboud University Medical Center

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NFU Consortium Quality of Care

Prof. H.A.H. (Karin) Kaasjager, MD, PhD, Internist, Professor of Acute Internal Medicine, UMC Utrecht M.J. (Maarten) van der Laan, MD, PhD, Vascular Surgeon, UMCG A. (Afke) van de Plas, MSc, Hospital Pharmacist, Maastricht UMC+

Acting Members of the Consortium J. (Joris) Fuijkschot, MD, PhD, General Pediatrician, Radboud university medical center’s Amalia Children’s Hospital Prof. D. (Diederik) Gommers, MD, PhD, Intensivist, Professor of Intensive Care Medicine, Erasmus MC J. (Jolande) van Luipen, MSc, Senior Staff Advisor on Quality of Care and Patient Safety, UMCU J.M.C. (José) Maessen, PhD, Staff Advisor Person-Centered Care, Quality & Safety department, MUMC+ R.N.P.M. (Rico) Rinkel, MD, PhD, ENT Physician, Laryngologist, Amsterdam UMC I. (Ingeborg) Steneker, PhD, Director Quality and Innovation, LUMC A. (Annelies) Visser, PhD, Senior Advisor/Implementation Expert of Quality and Integrated Capacity Management Amsterdam UMC G.A. (Gera) Welker, PhD, Advisor of Policy and Implementation, Coordinator of Kenniscentrum kwaliteit en veiligheid UMCG

Chair, Coordinator, and Secretary A. (Anouk) Vermeer, MSc, member of the Executive Board (Education and Patient Care) UMC Utrecht, Administrative Chair G.J. (Greetje) de Grooth, MD, PhD, MBA, Cardiologist, Head of Strategic Programs at LUMC, chair (starting September 2020) M.J. (Maarten) van der Laan, MD, PhD, Vascular Surgeon at UMCG co-chair (starting September 2020) N.J.H.W. (Nico) van Weert, PhD, Medical Sociologist, healthcare researcher, Coordinator (till September 2020) A.C. (Bart) Noort, PhD, Interim Secretary (till September 2020)

Afterword

Value-based care is equal to care that provides the best outcomes and experiences for the individual patient. The NFU focuses on good communication with the patient, interdisciplinary collaboration, and learning together to achieve better care. This ensures positive experiences for both the patient and the health-care provider. “The physician is very good at listening and letting you tell your own story. They can explain things through dialogue and carefully considered my situation.” “Finally all healthcare providers are working together.” “It gives me confidence that my GP consults the specialist so easily; they talk about me specifically.” “Making decisions together is very nice when you have multiple choices that can be very different for each patient.”

In an inspiring way, we have worked with the ideas of Michael Porter in recent years and have given our own perspective on value-based health care. Care teams and efficient health-care pathways are personalized based on the patient with a specific condition. We are increasingly working toward making decisions based on the relevance for the patient: outcomes that matter to them in their particular stage of life. We do this together with the patient. You read a few inspiring examples in this publication. We are able to continuously improve care because we are used to rapid developments. In doing so, we learn to move away from standards that do not contribute to value for the patient. The patient’s perspective serves as the basis. Smart technologies are also increasingly playing a role in the optimization of patient care. Further elaboration and upscaling are pivotal. But how do we take value-based care to the next level so that we can deliver truly sustainable personalized care? The current structure and organization of our health-­care system makes optimal collaboration difficult and raises difficult funding issues. Data-driven care is still in its early stages, while it is precisely this that will form the basis for the contribution that health-care professionals can make to their health in co-creation with patients. This is data that we obtain from the patient by using an app to regularly ask questions and by using wearables or smart home automation as well as data that we collect from all health-care providers and apply © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 N. van Weert, J. Hazelzet (eds.), Personalized Specialty Care, https://doi.org/10.1007/978-3-030-63746-0

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intelligently so that we are well informed and can really say something about the individual patient. These great opportunities call for innovation and digital transformation into a health-care system in which collaboration and teamwork is the norm. By focusing on the quality of life and self-reliance of the patient, building the care process around the patient, creating reliable information streams to connect care teams with each other and the patient, and making optimal use of data, we can put sustainable personalized care into practice. Sustainably providing optimal care requires optimal circumstances. The right conditions are required for this. How do we ensure that the health-care professional has the resilience and energy to initiate and learn to deal with this change? How do we establish the connection between the patient and the health-care professional, in which value-based care is expressed? And how do we create an open and safe culture that contributes to this? In the coming years, the NFU consortium Quality of Care will work on knowledge development on, the implementation of sustainable personalized care in practice, and the resilience of health-care professionals. Greetje de Grooth and Anouk Vermeer A. (Anouk) Vermeer-de Boer MSc, member of UMC Utrecht Executive Board, member of O&P and Administrative Chair of NFU consortium Quality of Care G.J. (Greetje) de Grooth MD, PhD, MBA, Cardiologist, Head of Strategic Programs at LUMC and member of NFU consortium Quality of Care