Experience in Healthcare Innovation E-Book
126,99 €
Mehr erfahren.
- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
Using the experience of patients, users, healthcare professionals and other stakeholders to innovate and rethink healthcare organizations and systems is gaining ground. Deploying these innovative methods and practices, however, requires an understanding and mastery of theoretical principles, as well as experimenting with them in the field.
Experience in Healthcare Innovation alternates between theoretical presentations and case studies/examples in order to present the key notions of innovation in healthcare and the experiences of the people at the heart of healthcare ecosystems. It brings together diverse and complementary perspectives, shedding new light on the issue of healthcare experience through the prism of innovation. It includes a wealth of resources, ideas and results for all of those in healthcare wishing to implement innovative approaches that place the human experience at the heart of healthcare ecosystems.
Das E-Book können Sie in Legimi-Apps oder einer beliebigen App lesen, die das folgende Format unterstützen:
Seitenzahl: 510
Veröffentlichungsjahr: 2024
Ähnliche
Table of Contents
Cover
Table of Contents
Title Page
Copyright Page
Foreword by Vincent Dumez
Foreword by David Darmon
Introduction
References
PART 1: Crossed Perspectives on Experiential Knowledge
Introduction to Part 1
References
1 User Knowledge, a Key Ingredient for Health Innovation and the Sustainability of our Health Systems
1.1. Introduction
1.2. Innovation
1.3. Towards open innovation
1.4. Health innovation
1.5. Responsible health innovation
1.6. Participation of patient-caregivers and citizens in innovation
1.7. Open innovation practices to bring patient-caregivers and citizens to contribute to innovations
1.8. Conclusion
1.9. References
2 The Experience of Caregivers in Supporting People with Neurodegenerative Diseases
2.1. Introduction
2.2. Theoretical framework
2.3. Data and method
2.4. Results
2.5. Conclusion
2.6. References
3 The Experiential Approach and Alzheimer’s Disease: Including the Spiritual Dimension for a More Global Approach
3.1. Introduction
3.2. Alzheimer’s disease: loss or search for meaning?
3.3. Obstacles to taking the spiritual dimension into account in support
3.4. Perspectives: ways to approach the overall lived experience
3.5. Conclusion
3.6. References
4 Rethinking the Organization of SDCCs
1
in Light of the Experience of Volunteers in a State of Great Social Precariousness
4.1. Introduction
4.2. Theoretical framework: social regulation and experiential knowledge
4.3. A situation to transform: the Boutique Solidarité de Marseille (BSM) of the Abbé Pierre Foundation
4.4. The intervention-research (IR) approach
4.5. The transformation of the BSM: the establishment of the Mutual Agreement Contract (MAC) as a regulation tool
4.6. Analysis of the transformation: more balanced regulations
4.7. Conclusion
4.8. Appendix
4.9. References
5 Professional, Team and Digital Identity: The Impact on Patient Experience
5.1. Introduction
5.2. Conceptual background
5.3. Patient experience and health and social care professionals’ identity
5.4. Implications
5.5. Conclusions
5.6. References
6 Mobilizing the Experience of People with Disabilities: A Necessity in the Transfer of Innovations
6.1. Introduction
6.2. The transfer of innovations to accelerate the transformation of services: a new approach
6.3. People’s experience at the heart of the development of ground innovations in the field of disability
6.4. Taking into account the experience of people with disabilities in the transfer process
6.5. Implementation
6.6. Conclusion
6.7. References
PART 2: Crossed Perspectives on the Impacts on Organizations and Health Systems
Introduction to Part 2
References
7 Reorienting Our Health System towards its Users Thanks to Design Thinking: The Experience of Kaiser Permanente
7.1. Introduction
7.2. A lever for rebalancing powers between users and traditional experts
7.3. A lever for cultural transformation in the dual bureaucratic and health context
7.4. Obstacles and facilitators to integration
7.5. Discussion
7.6. Appendix: methodology
7.7. References
8 Patient-Centered Care at Public Hospitals: A War of the Worlds?
8.1. Introduction
8.2. Patient-centered care
8.3. The theory of economies of worth – a key for understanding tensions
8.4. Study of the orthopedics department of a Parisian hospital
4
8.5. Conclusion
8.6. References
9 A Brief History of Changes in the Medico-Social Sector over Recent Decades. Interview with Marielle Ravot
9.1. Introduction
9.2. Interview
9.3. The experience
9.4. Appendix: list of acronyms
9.5. References
10 EPoP: An Approach to Developing Peer Intervention
10.1. Introduction
10.2. The EPoP approach: a necessary framework for action
10.3. The choice of a territorial approach
10.4. The stabilization of a new function, peer-intervener and of a new mission, peer intervention representatives
10.5. Presentation of a panel of peer-intervener projects supported by EPoP
10.6. Conclusion
10.7. References
11 The Potential for Digital Health to Reframe the Role of Compassion in Patient Experience Innovation
11.1. Introduction
11.2. Definitions
11.3. Compassion in digital health
11.4. Deconstructing patient experience
11.5. Blending digital health with the human touch for positive patient experiences
11.6. Conclusion
11.7. References
12 Help with Prescribing Mobile Health Applications: A Partnership Design
12.1. Introduction
12.2. ApiAppS research, a response adapted to the times?
12.3. Design carried out with the participation of citizens
12.4. Categorization choices and their development during this research
12.5. A dynamic mobilizing cross-perspectives between patients and doctors
12.6. Conclusion
12.7. References
13 Beyond the Testimony: Patient Partners and Ongoing Education Program
13.1. Introduction
13.2. Train-the-trainer program an effective strategy for professional development in primary care
13.3. Innovation in the train-the-trainer approach through increased patient participation
13.4. Study context
13.5. Theoretical framework
13.6. Intervention
13.7. Methodology
13.8. Results
13.9. Favorable conditions for full recognition of trainer status for patients in the context of ongoing training
13.10. An enrichment proposal for the Montreal model
13.11. Conclusion
13.12. References
14 The Care Partnership: Challenges and Perspectives for Healthcare Systems
14.1. Introduction
14.2. Context and definitions
14.3. Theoretical foundations of the research
14.4. Methodology
14.5. Main research results
14.6. Conclusion
14.7. References
List of Authors
Index
Other titles from iSTE in Innovation, Entrepreneurship and Management
End User License Agreement
List of Tables
Chapter 1
Table 1.1. Value domain of the responsible innovation in health (RIH) model (S...
Table 1.2. Distinction between the patient, the caregiver and the citizen (ins...
Chapter 2
Table 2.1. Degrees of patient involvement. Codetermined forms of participation...
Table 2.2. Positioning of informal caregivers: an implication of complementari...
Chapter 4
Table 4.1. Situation of the Boutique Solidarité in 2017
Table 4.2. New forms of regulation within the BSM
Table 4.3. Regulation spaces
Table 4.4. The progression of intervention-research (according to the model of...
Chapter 5
Table 5.1. Research on patient experience and health and social care professio...
Chapter 7
Table 7.1. Values experienced in the design thinking experience
Table 7.2. Obstacles and levers to the integration of design thinking in ...
Chapter 8
Table 8.1. The seven worlds of economies of worth (inspired by Boltanski and T...
Chapter 10
Table 10.1. Global presentation of the characteristics of peer-interveners and...
List of Illustrations
Chapter 1
Figure 1.1. Opening up innovation – three perspectives.
Figure 1.2. Conceptual framework for responsible innovation in health (RIH) (I...
Chapter 5
Figure 5.1. Discovery mode concept map (visible concepts: 100%, theme size: 75...
Chapter 6
Figure 6.1. The transfer process (figure from Ségard (2022)).
Chapter 7
Figure 7.1. The design thinking process (according to uxdesign.cc).
Figure 7.2. “The compass” of co-design with users ...
Chapter 10
Figure 10.1. Schematization of the organization and interdependence of the two...
Figure 10.2. Extract from the infographic developed by the EPoP team presenting...
Chapter 12
Figure 12.1. ApiAppS working process.
Figure 12.2. Functional architecture of the ApiAppS_InSa project.
Chapter 13
Figure 13.1. The Montreal model (Pomey et al. 2015)
Figure 13.2. The Front-Line Train-the-Trainer Approach (F2PL) Intervention
Figure 13.3. An enrichment proposal for the Montreal model (Pomey et al. 2015)
Chapter 14
Figure 14.1. Gradual evolution of the care partnership (according to: CPASS)....
Figure 14.2. Extract from the RSRL poster on the anticipated care plan (ProSA ...
Figure 14.3. Challenges for the deployment of care partnerships in healthcare ...
Guide
Cover Page
Table of Contents
Title Page
Copyright Page
Foreword by Vincent Dumez
Foreword by David Darmon
Introduction
Begin Reading
List of Authors
Index
Other titles from iSTE in Innovation, Entrepreneurship and Management
WILEY END USER LICENSE AGREEMENT
Pages
iii
iv
xiii
xiv
xv
xvi
xvii
xviii
xix
xx
xxi
xxii
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
36
37
38
39
40
41
42
43
44
45
46
47
48
49
50
51
52
53
54
55
56
57
58
59
60
61
62
63
64
65
66
67
68
69
70
71
72
73
74
75
76
77
78
79
80
81
82
83
84
85
86
87
88
89
90
91
92
93
94
95
96
97
98
99
100
101
102
103
104
105
106
107
108
109
110
111
112
113
114
115
116
117
118
119
120
121
122
123
124
125
126
127
128
129
130
131
132
133
134
135
136
137
138
139
140
141
142
143
144
145
146
147
148
149
150
151
152
153
154
155
156
157
158
159
160
161
162
163
164
165
166
167
168
169
170
171
172
173
174
175
176
177
178
179
180
181
182
183
184
185
186
187
188
189
190
191
192
193
194
195
196
197
198
199
200
201
202
203
204
205
206
207
208
209
210
211
212
213
214
215
216
217
218
219
220
221
222
223
224
225
226
227
228
229
230
231
232
233
234
235
236
237
238
239
240
241
242
243
244
245
246
247
248
249
250
251
252
253
254
255
256
257
258
259
260
261
262
263
264
265
266
267
268
269
270
271
272
273
274
275
276
277
278
279
280
281
282
283
284
285
286
287
288
289
290
291
292
293
294
295
296
297
Health and Innovation Set
coordinated byCorinne Grenier
Volume 5
Experience in Healthcare Innovation
Fad or New Paradigm?
Edited by
Luigi Flora
Corinne Grenier
Frédéric Ponsignon
First published 2024 in Great Britain and the United States by ISTE Ltd and John Wiley & Sons, Inc.
Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms and licenses issued by the CLA. Enquiries concerning reproduction outside these terms should be sent to the publishers at the undermentioned address:
ISTE Ltd27-37 St George’s RoadLondon SW19 4EUUK
www.iste.co.uk
John Wiley & Sons, Inc.111 River StreetHoboken, NJ 07030USA
www.wiley.com
© ISTE Ltd 2024The rights of Luigi Flora, Corinne Grenier and Frédéric Ponsignon to be identified as the authors of this work have been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.
Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author(s), contributor(s) or editor(s) and do not necessarily reflect the views of ISTE Group.
Library of Congress Control Number: 2024931120
British Library Cataloguing-in-Publication DataA CIP record for this book is available from the British LibraryISBN 978-1-78630-845-0
Foreword by Vincent Dumez
This book proposes an international kaleidoscope of the current deployment of the notion of patient experience and consequently that of patient partnership through the combined perspectives of patients and health professionals. Each of the experiments presented here constitutes an invaluable source of innovation through the engagement mechanisms developed as much as through the results observed on the strategic, tactical and operational levels. They also cut across the major missions of our health systems, namely care, teaching and research, showing that we are undoubtedly in the midst of large-scale systemic organizational and cultural change with multiple impacts.
At the heart of these experiments is the fundamental question of the mobilization of patient knowledge in different forms and by different means. This knowledge, still poorly known, underestimated and consequently underused, is nevertheless the main “fuel” of the innovation driven by this movement of change that we discover in this work through the achievements of actors from extremely varied horizons. From the engagement initiative of a large private health organization like Kaiser Permanente, to the pioneering initiative of a living laboratory in the clinical context of a public university hospital, to advocacy in the context of Alzheimer’s disease, “patient” knowledge is highlighted again and again as a lever for innovation at the very heart of patient experience.
To support this critical effort to mobilize patient knowledge, an organizational transformation must of course be supported by inspired leadership and a vision of humanist care. Our health institutions have most of the time been structured above all to support the practices of health professionals putting the experience of patients and their families second. The reversal of this logic to aim for a better balance requires us to rethink certain hitherto unshakable fundamental operational pillars. Several avenues of innovation are proposed for this purpose in this work, particularly in terms of supporting the most vulnerable populations which are too often on the margins of our systems, as well as in terms of profound and necessary change in the philosophy of care or even the digital revolution, an irresistible and radical lever for modifying the practices of all health stakeholders including patients and their families. Through these structuring innovations, the patient experience is therefore lastingly transformed, inviting an in-depth questioning of institutional modes of operation and the way in which we orchestrate communication and collaboration and therefore, consequently, the sharing of knowledge and power.
Finally, in this proliferation of innovations characteristic of major emerging transformation movements, it remains essential to implement mechanisms to fully understand their nature, their systemic ramifications, their impacts in fine on health and possibly also, their limits. We must therefore evaluate initiatives as systematically as possible and produce research to develop the science of patient experience and partnership with a view to the “intelligent” scaling of innovations. This work also offers some significant avenues for reflection on this very critical question, on how this science can help us to transfer and scale innovations in a precise and adapted way, as well as on what it teaches us in terms of the evolution of roles, the development of capacities or of an organizational model.
Happy reading!
Vincent DUMEZ
Member of the National Order of QuebecPartner patientCo-director of the Center of Excellence onPatient and Public Partnership (CEPPP)University of Montréal
Foreword by David Darmon
The care partnership with the patient is considered an important social innovation because it strengthens patients’ engagement and responsibility in their own care. This can improve health outcomes, patient satisfaction and quality of life. Care partnerships are based on transparent communication and active collaboration between patients and healthcare professionals, allowing care plans to be personalized and taking into account patients’ unique preferences and needs. It can also reduce healthcare costs by minimizing medical errors and unnecessary hospitalizations. Technological innovations are also important, but the care partnership emphasizes the human connection and collaboration to achieve optimal health outcomes.
In a world where new techniques and technologies have taken a prominent place in our lives, it is increasingly important to understand how they can be used to improve the quality of medical care. This book examines the importance of patient participation in care using, among other things, innovations to facilitate communication, collaboration and decision-making. It demonstrates how patients can become active partners in their own care by using the digital tools available to them to collect and share information, monitor their health and better understand treatment options. Perspectives from healthcare professionals, patients and technology experts are explored to provide a comprehensive picture of the use of new technologies in medical care. This book is a valuable guide for those seeking to understand how new technologies can help improve care for partner patients. The example of mobile health applications is an illustration of this in that they can enable the autonomy of patients, when and if they wish, by giving them access to information on their state of health and advice on how to manage their illness, as well as allowing them to monitor their progress and communicate with their doctor and other health and medico-social professionals. It also values their experiential knowledge by giving them an active role in managing their health and recognizing their expertise with regard to their own body and its symptoms.
Corinne Grenier, through her systemic vision, and Luigi Flora, as a patient researcher and pioneer of the vision of partnership (with whom I have the pleasure of directing the Center for Innovation in Partnership with Patients and the Public at the University of Côte d’ Azur), offer through this collective work a reflection on the evolution of care and on what there is to come as well as a desirable future.
Once you have taken the path of partnership, it is difficult to turn back, as you will notice when reading this book.
Introduction
This book, entitled Experience in Healthcare Innovation: Fad or New Paradigm?, follows the international conference held in June 2021 on health innovation through shared perspectives, and even experiences combining the knowledge of each person. Through this book, the opportunity is given to contributors (who may or may not have participated in the conference) to, shed light on the subjects covered. In-depth studies can, for some, take up questions asked during the discussions following the communications presented during the 2021 conference.
The 2021 conference was the result of an initiative born in 2008. The KEDGE Business School health conferences are organized by Corinne Grenier1 in partnership with the social work research institutes (IRTS) of Provence-Alpes-Côte d’Azur-Corsica and Nouvelle Aquitaine, with the support of the ARAMOS association. They question actors, organizations and public authorities in the health and social action sectors using a multidisciplinary approach to better understand their dynamics. In 2021, after the brand new Center for Innovation in Partnership with Patients and the Public (CI3P) of the Faculty of Medicine of Côte d’Azur University (Flora et al. 2020) proposed two communications at the previous conference2, the 2021 conference pursues the ambition of questioning innovation by partnering with the CI3P, an innovation center co-directed by a doctor–patient tandem, through the perspective of the experience of stakeholders: new perspectives on health innovation.
According to the book Terminologie de la pratique collaborative et du partenariat patient en santé et services sociaux (Direction collaboration et partenariat patient (DCPP-CIO, UdeM 2016)), the patient experience is defined as:
The overall knowledge drawn from situations experienced living with the disease which have an impact on the patient, as much on their ways of taking care of themselves, of interacting with those involved, as on their way of using health services and social services (Ibid., p. 17).
The place and role of the people concerned (patients, people with disabilities and caregivers) in their relationship to the experience of living with illness or a disability situation have attracted the interest of the human and social sciences since the 1950s, in particular with regard to the first works focusing on relationships between health professionals and patients in order to explain care trajectories and the organizational and managerial structuring allowing for the delivery of care (Strauss 1992). Anthropology (Laplantine 1986) has also been concerned with the way in which patients experience their illness by emphasizing the social and cultural elements, which permeate their experience of their illness and their recovery. It was firstly with the emergence of pathologies such as AIDS (Epstein 1996) in the third sector health environment and the perspective of community health, for example, that the experience was questioned in its collective dynamics. This was, however, a societal movement, which was made broader with the birth of popular epidemiology in the 1970s, through population reactions to attacks on health due to local pollution in the USA, and which has since spread across the planet as populations gradually sense or perceive risks to their health, which are factors of public health problems (Brown 1987, 1997).
To better understand what has become a social fact in the 20th century, the following have appeared or been recovered (Flora 2012; Flora et al. 2014; Jouet 2014) in the sense given to them by the father of sociology Emile Durkheim (1894), concepts such as empowerment or recovery and capability (Le Gales and Bungener 2015), coming from the field of North American psychiatry and taken up by French researchers (Greacen and Cadeau 2012) which now irrigate the work on experience (Troisoeufs 2020). Other concepts come from the political sciences and evoke the question of citizen participation. Multiple user participation and professionalization initiatives exist, such as the Montreal model (Vanier et al. 2014; Pomey et al. 2015), the expert patient program in England (Rogers et al. 2008) or the model of narrative medicine (Charon 2015).
Many terms have come to enrich the roles that patients can endorse in the health system: the expert user (Jouet et al. 2010); the trainer-patient (Flora 2010); the resource-patient developed by the French Association of Hemophiliacs since the beginning of the century3; the researcher-patient (Godrie 2017); the health mediator-peer (Roelandt et al. 2016); the expert-patient (Tourette-Turgis 2015); the teacher-patient (Gross and Gagnayre 2017); the partner-patient (Pomey et al. 2015); and the tracer-patient (HAS 2014).
At the international level, multiple initiatives for the participation and professionalization of patients, relatives and health users have existed for several years. For example, in France, experiences of peer health mediators supported by the WHO can be identified (see the report from the World Health Organization Collaborating Center (WHOCC) (Roelandt et al. 2015)). More broadly, we finally talk about the professionalization of patients/users to configure participatory health systems.
This trend, the social fact of recognizing patients’ knowledge, is thus carried by patients and relayed by international (Consortium APPS 2020) and national (HAS 2020) agencies as well as by major Evidence Based Medicine journals (EBM) (Richards et al. 2013). These different models are based on a renewed partnership between patients and professionals. The latter are challenged on two counts: a) because their practices are questioned by what patients, beneficiaries and citizens tell them; b) as well as because the experience of professionals counts just as much and their lived experience of their work needs to be integrated into innovation approaches.
Thus, the chapters issued from the 2021 conference consider the experience of patients, relatives and/or segments of the population just as much as the experience of professionals to address the question of innovation in health. This perspective thus adopts the point of view of the organization or its representatives and would be the primary cause of the power to act.
As a result, it is possible through the insights offered throughout the chapters to apprehend and understand how experience is now reinvested when each of the parties is interested in innovation approaches and in the capacity of health organizations and the health system to innovate in partnership with patients, relatives and citizens. The relationship appears a priori to be virtuous: taking into account the lived experience of the people concerned (patients, beneficiaries, caregivers, professionals, volunteers, citizens, etc.) so as to imagine, design and deploy interventions, organizations or services that are more appropriate and appropriable by these actors. The recognition of experience, and of citizen participation in the creation and deployment of public policies, raises complex questions, some of which the chapters proposed in this work shed light on.
References
Brown, P. (1987). Popular epidemiology: Community response to toxic waste-induced disease in Woburn, Massachusetts and other sites.
Science, Technology, and Human Values
, 12(3/4), 76–85.
Brown, P. (1997). Popular epidemiology revisited.
Current Sociology
, 45(3), 137–156.
Charon, R. (2015).
Médecine narrative. Rendre hommage aux histoires de maladies
(translated from the English version published by Oxford University Press in 2006). Sipayat, Paris.
Consortium INTERREG APPS (2020). Orienter les soins vers le patient partenaire : un livre blanc pour la grande région Consortium APPS/Octobre 2020. White paper, Fonds européen de développement régional.
DCPP, CIO (2016). Terminologie de la pratique collaborative et du partenariat patient en santé et services sociaux. DCPP/CIO/Université de Montréal.
Durkheim, E. (1988).
Les règles de la méthode sociologique
. Flammarion, Paris [Original published 1894].
Epstein, S. (1996).
Impure Science, Aids, Activism and the Politics of Knowledge
. University of California Press, Berkeley.
Flora, L. (2010). Le patient formateur auprès des étudiants en médecine : un concept effectif.
Revue générale de droit médical
, 34, 115–135.
Flora, L. (2012). Le patient formateur : élaboration théorique et pratique d’un nouveau métier de la santé. PhD Thesis, Université Vincennes Saint Denis, Paris.
Flora, L. (2021). Recognition of patients’ experiential knowledge and co-production of care knowledge with patients and citizens in the 21st century. In
Altering Frontiers: Organizational Innovations in Healthcare
, Grenier, C. and Oiry, E. (eds). ISTE Ltd, London, and John Wiley and Sons, New York.
Flora, L., Jouet, E., Las Vergnas, O. (2014). Contribution à la cartographie des publications établissant le fait social de la reconnaissance des savoirs des malades. In
Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé
, Jouet, E., Las Vergnas, O., Noel-Hureaux, E. (eds). Archives contemporaines, Paris, 235–236.
Flora, L., Darmon, D., Benattar, J.-M. (2020). Le Centre d’Innovation du partenariat avec les patients et le public : un moteur du développement de la culture du partenariat de soin avec le patient, avec les patients et le public en Europe.
Le partenariat de soin avec le patient : analyses
, CI3P, Université Côte d’Azur, 1, 138–163.
Godrie, B. (2017). Rapports égalitaires dans la production des savoirs scientifiques. L’exemple des recherches participatives en santé mentale.
Vie sociale
, 20, 99–116.
Greacen, T. and Jouet, E. (2012).
Pour des usagers de la psychiatrie acteurs de leur propre vie
. Erès, Toulouse.
Gross, O. and Gagnayre, R. (2017). Caractéristiques des savoirs des patients et liens avec leurs pouvoirs d’action : implication pour la formation médicale.
Revue française de pédagogie
, 201, 71–82.
HAS (2014). Le patient traceur en établissement de santé. Méthode d’amélioration de la qualité et de la sécurité des soins guide méthodologique. Haute Autorité de Santé [Online]. Available at:
https://www.has-sante.fr/jcms/c_1661702/fr/le-patient-traceur-enetablissement-de-sante
.
HAS (2020). Soutenir et encourager l’engagement des usagers dans les secteurs social, médico-social et sanitaire. Haute Autorité de Santé.
Jouet, E. (2014). La reconnaissance des savoirs des malades : de l’émergence au fait social. In
Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé
, Jouet, E., Las Vergnas, O., Noel-Hureaux, E. (eds). Archives contemporaines, Paris, 9–21.
Jouet, E., Flora, L., Las Vergnas, O. (2010). Construction et reconnaissance des savoirs expérientiels des patients.
Pratique de formation/Analyses
, 58/59, 13–94.
Karazivan P., Dumez V., Flora L., Pomey M.-P., Del Grande C., Guadiri S., Fernandez N., Jouet E., Las Vergnas O., Lebel P. (2015). The patient as partner in care: Conceptual grounds for a necessary transition.
Academic Medicine
, 90(4), 437–441 [Online]. Available at:
http://journals.lww.com/academicmedicine/Fulltext/2015/04000/The_Patient_as_Partner_Approach_in_Health_Care_A.15.aspx
.
Laplantine, F. (1986).
Anthropologie de la maladie
. Payot, Paris.
Le Gales, C. and Bungener, M. (2015).
Alzheimer : préserver ce qui importe. Les “capabilités” dans l’accompagnement à domicile
. Presses Universitaires de Rennes, Rennes.
Pomey, M.-P., Flora, L., Karazivan, P., Dumez, V., Lebel, P., Vanier, M.-C., Débarge, B., Clavel, N., Jouet, E. (2015). Le “Montréal model” : enjeux du partenariat relationnel entre patients et professionnels de santé.
Santé publique
, 41–50.
Richards, T., Montori, V.M., Godlee, F., Lapsley, P., Paul, D. (2013). Let the patient revolution begin.
BMJ
, 346, f2614–f2614.
Roelandt, J. and Staedel, B. (2016).
L’expérimentation des médiateurs de santé/pairs : une révolution intranquille
. Doin, Paris.
Rogers, A., Kennedy, A., Bower, P., Gardner, C., Gately, C., Lee, V., Reeves, D., Richardson, G. (2008). The United Kingdom Expert Patients Programme: Results and implications from a national evaluation.
MJA
, 189(10) [Online]. Available at:
https://www.mja.com.au/system/files/issues/189_10_171108/rog10822_fm.pdf
.
Strauss, A. (1992).
La trame de la négociation. Sociologie qualitative et interactionnisme
. L’Harmattan, Paris [Original published 1978].
Tourette-Turgis, C. (2015). Les patients experts et les soignants, vers des relations de réciprocité.
Soins
, 796, 35–37.
Troisoeufs, A. (2020). Patients intervenants, médiateurs de santé-pairs : quelles figures de la pair-aidance en santé?
Rhizome
, 75/76(1/2), 27–36.
Vanier, M.-C., Dumez, V. Brault I., Boucher, A. (2014). Partners in interprofessional education: Integrating patients-as-trainers. In
Partnering with Patients, Families, and Communities to Link Interprofessional Practice and Education
. Josiah Macy Jr. Foundation, New York, 73–84.
Notes
Introduction written by Luigi FLORA, Corinne GRENIER and Frédéric PONSIGNON.
1
Coordinator of the “
Innovation, Healthcare and Inclusive Society
” Lab.
2
Two communications which resulted in publication (Flora 2021).
3
See:
https://afh.asso.fr/je-me-forme/leducation-therapeutique-des-patients/patientsparentsressources/programme-patients-parents-ressources/
.
PART 1Crossed Perspectives on Experiential Knowledge
Introduction to Part 1
The first part of the book Experience in Healthcare Innovation: Fad or New Paradigm? is made up of six chapters combining different views, perspectives and areas in order to deepen the notion of experience.
Geneviève Cyr and Marie-Pascale Pomey offer us the first chapter entitled “User Knowledge, a Key Ingredient for Health Innovation and the Sustainability of our Health Systems”.
Here, it is the patients and caregivers who are at the heart of the authors’ chapter, developing experiential knowledge related to their health condition and the use of both health and medico-social services. This knowledge is considered to be an important resource in health innovation approaches; their active engagement is recognized as an essential element of a learning health system and as one of the necessary conditions for redesigning the health system (Carman et al. 2013). With the description of a few concrete cases, the authors deepen the distinction between patient participation (and that of their caregivers) and citizen participation in the evolution of the health system, all of this according to different levels of participation, allowing new ways to create value for the system.
Open innovation is defined with regard to three complementary perspectives: centered on users and the response to their needs, centered on the organization and the creation of value through the search for new market opportunities, and centered on the ecosystem, looking at spaces and places for generating new ideas. This form of innovation is necessarily collaborative, participatory and very often emergent. In the field of health, the search for value takes on particular meanings such as: improving the efficiency, effectiveness, quality, safety and/or affordability of health care (WHO 2023). It is about improving or transforming treatment, diagnosis, education, awareness, prevention, research quality and delivery, and access to health care (Kimble and Massoud 2017).
The authors look with interest at a particular case of innovation, so-called responsible innovation (RIH, responsible innovation in health), defined as a collaborative approach by which stakeholders commit themselves to clarify and implement a set of principles and values as well as ethical, economic, social and environmental requirements in order to respond to the challenges and needs of health systems in a sustainable manner (Silva et al. 2018). RIH targets five areas of value: for the population, for the health system, the economy, the organization and the environment. The objectives are all the more achieved when the participation of individuals is strong. Cyr and Pomey then rely on the typology of Arnstein (1969), which defines the degree of citizen participation in eight levels (manipulation, education, information, consultation, involvement, partnership, delegation of powers and control of citizens) to propose a similar scale for the participation of patients and health users. The authors also rely on Kaulio’s model (1998) to understand the modalities of user involvement in innovation processes.
These methodological approaches for working with patients and caregivers’ voices and making them heard are illustrated by different examples of spaces such as hackathons and “living laboratories” (Niitamo and Leminen 2011), those of the LIO (research laboratory in imaging and orthopedics, CHU Montreal, Canada) and of the Living Lab LUSAGE (Broca Hospital, Paris, France), for example.
Anaïs Cheneau and Valérie Fargeon focus on caregivers of the elderly in the second chapter entitled “The Experience of Caregivers in Supporting People with Neurodegenerative Diseases”, wondering if their particular position (neither patients nor professionals) does not make their experiences and their forms of involvement and participation specific. The authors study the cases of caregivers of people with Parkinson’s disease or amyotrophic lateral sclerosis (ALS).
This work is a continuation of initial work on the production of care by caregivers (Bungener 1987), particularly through the capabilities approach (Le Galès et al. 2015), which allows us to understand what they do, for what reasons and the conditions for carrying out their activities. It aims to understand the particular case of the participation of relatives and caregivers, with regard to the modalities of patient involvement and participation in care, and, for example: on an information–consultation–collaboration–partnership continuum (Pomey et al. 2015) for the micro level of care and the clinical relationship, or with regard to the work of Scholl et al. (2014) for a more global approach, focusing on access to care, its coordination and continuity, as well as teamwork.
Cheneau and Fargeon conclude their study by showing that the participation of loved ones, ranging from dialogue with professionals to co-production in care actions, varies depending on the loved ones and the components of support during the care process. This variability reflects situations where involvement or noninvolvement is sometimes desired, sometimes constrained, in particular to overcome the difficulties of access to professionals or of hospital organization. It also reveals the weakness of the psychosocial approach in the health system. The involvement and participation of loved ones are the expression of two non-convergent logics: an institutional logic of cost reduction and a logic where loved ones seek to strengthen their capacity to act.
Ruth-Laure Alamarguy and Pauline Lenesley deepen the experience of people with Alzheimer’s disease by focusing on the spiritual dimension of this experience. Their chapter is entitled: “The Experiential Approach and Alzheimer’s Disease: Including the Spiritual Dimension for a More Global Approach”. It is here a multidimensional approach to the sick person is considered, since “spirituality fundamentally responds to the need to find meaning and reason for the events of life (Jobin 2012)” (quoted by Gaillard Desmedt and Shaha (2013, p. 1)). This is frequently defined as “an aspect of humanity that refers to the way individuals seek and express meaning and purpose, and the way they experience their connection to the moment, to themselves, to others, to nature, and to the signifier or the sacred” (Appleby et al. 2018).
However, several studies show that the spiritual dimension of support and care is little taken into account due to the lack of time or to the discomfort of distinguishing between spirituality and religion. From then on, Alamarguy and Lenesley wonder how to reconcile this issue of quality of care with the embarrassment caused by the evocation of the spiritual; and how to understand the spiritual dimension in a healthcare situation, beyond the strong influence of a biomedical vision of disorders. The first meta-analysis (Edward et al. 2010) has already revealed that it is above all the relationship that is decisive in taking spiritual needs into account.
Based on ethnographic research in EHPADs1, the authors first highlight the important role of the establishment’s commitment to taking the spiritual experience of residents into account when supporting professionals. However, they engage in it in three proactive ways, at the explicit request of the resident, some more in the background; positions depending on the way in which the professional views their own spirituality. They conclude their work by proposing some recommendations.
In the fourth chapter “Rethinking the Organization of SDCCs in Light of the Experience of Volunteers in a State of Great Social Precariousness”, Corinne Grenier analyzes the regulatory work within an accueil de jour (ADJ), or day center, started by a team of around 10 social workers to ease tensions, support the quality of the work and allow those welcomed to truly find a haven of peace and comfort. This day center, called Boutique Solidarité, is managed by the Abbé Pierre Foundation and is located in one of the districts of Marseille (France) known as one of the poorest in Europe. Those welcomed are people in great social and economic precariousness. This organization is mainly defined by its welcoming mission “in unconditionality” and as a space of relationship and expression which is open to all and where people create meaning and commonality together; it is intentionally a place of very weak control regulation (Martinez-Perez 2013). However, the multiplicity of incidents, sometimes serious, was putting more and more strain on the team and those welcomed, including the volunteers, who, support the salaried team in their activity for around two mornings per week. The bet is that this work can contribute to their recovery process.
The author conducted action research at the request of the foundation in order to rethink the framework of the action, thus asking the research question by mobilizing the theory of regulation (Reynaud 1997) and the notion of experiential knowledge: “to what extent does the experiential knowledge of volunteers contribute to the regulatory work within a day center?”. This articulation was observed around the establishment of a new system, the Mutual Agreement Contract (MAC), which defines the framework for action of volunteers with those welcomed and with the team. We have also defined the method of management of the MAC (signature, discussion time to take focus in on volunteers and their activities) as well as a better organization of the activity of the Boutique in general. For the Boutique, the MAC had to be a tool that participates in the volunteer’s recovery process, by supporting their behavior, as well as their experiential knowledge. This knowledge is built in the experience of being welcomed at the Boutique, in being with others, identifying or analyzing situations or more generally in knowing what to do and what to say in certain circumstances.
The process of implementing the MAC has made it possible to bring about a “peaceful” joint regulation, wherein volunteers and teams interact more to know how to act in the face of any situation. The capacity of volunteers to put forward their knowledge and the attention paid by employees were possible thanks to the establishment of several regulatory spaces, allowing a “long and repeated practice of an activity which allows the emergence of the experienced individual” (Demailly and Garnoussi, 2015, p. 58). This being said, this joint regulation still proves to be unstable, in particular because the team has not managed to support a space specific to volunteers, and still remains uncertain about the reason to support and use the experiential knowledge of volunteers, for the proper functioning of the Boutique or for their good recovery.
In their chapter “Professional, Team and Digital Identity: The Impact on Patient Experience”, Stephanie Best, Ann Dadich and Sharon Williams examine how new forms of collaboration, particularly through digital tools, impact the identity of caregivers and medico-social workers, and consequently the way in which the patient experience is taken into account by the latter.
The way of apprehending this is generally founded on PROMs and PREMs measures2. The first allow patients to express their opinion on their care and support; the latter to capture their experience (in relation in particular to their circulation in the health system, their involvement in decisions, the quality of communication with professionals, etc.).
The authors endeavor to define digital identity, which emerges in a fluid manner, through the use of digital tools such as consultation, coordination, communication and collaboration platforms. It develops through socialization between actors, their use reinforcing it in return.
The authors identified nine major articles that allow the investigation of the relationship between digital team identity and patient experience (in particular), through lexical analysis (Gephart 2004). This reveals that the patient health–identity–experience relationship is very little studied in the literature. The authors suggest avenues for research.
In the last chapter of this first part, Éléonore Ségard and Philippe Chervin examine “Mobilizing the Experience of People with Disabilities: A Necessity in the Transfer of Innovations”. Disability is seen as the situational result of an interaction between a person who is physically or functionally different and a specific physical and social environment (Fougeyrollas 2002). The Convention on the Rights of Persons with Disabilities (CRPD) adopted in 2006 by the United Nations recognizes disability as a human rights issue and questions their inclusion in society and the recognition of disabled peoples’ experience. In particular, the authors question the role of experiential knowledge in social innovations carried out to transform the medico-social field, and their transfer (swarming), to accelerate (or scale up) this –transformation; a dynamic which remains little explored in this field, described by Ségard (2022) in four processes: evaluation, capitalization, transferability and implementation. The authors describe each of the four processes with regard to the experience of people with disabilities. They show that the experience of disabled people can be thought of at two levels in the transfer of innovations: a) the experience of people who participate, upstream, in the design of the innovation and b) the experience of people who benefit from and experience the innovation in the original context and then in a new context following its transfer.
References
Appleby, A., Wilson, P., Swinton, J. (2018). Spiritual care in general practice: Rushing in or fearing to tread? An integrative review of qualitative literature.
Journal of Religion and Health
, 57(3), 1108–1124.
Arnstein, S.R. (1969). A ladder of citizen participation.
Journal of the American Institute of Planners
, 35(4), 216–224.
Bungener, M. (1987). Logique et statut de la production familiale de santé.
Sciences sociales et santé
, 5(2), 45–59.
Carman, K.L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., Sweeney, J. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies.
Health Affairs
, 32(2), 223–231.
Demailly, L. and Garnoussi, N. (2015). Le savoir-faire des médiateurs de santé pairs en santé mentale, entre expérience, technique et style.
Sciences & Action Sociales
, 1, 51–72.
Edwards, A., Pang, N., Shiu, V., Chan, C. (2010). The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: A meta-study of qualitative research.
Palliative Medicine
, 24(8), 753–770.
Fougeyrollas, P. (2002). L’évolution conceptuelle internationale dans le champ du handicap : enjeux socio-politiques et contributions québécoises.
Perspectives interdisciplinaires sur le travail et la santé
. doi: 10.4000/pistes.3663.
Gaillard Desmedt, S. and Shaha, M. (2013). La place de la spiritualité dans les soins infirmiers : une revue de littérature.
Recherche en soins infirmiers
, 115, 19–35.
Gephart, R.P. Jr. (2004). From the editors: Qualitative research and the Academy of Management Journal.
Academy of Management Journal
, 47(4), 454–462.
Jobin, G. (2012).
Des religions à la spiritualité. Une appropriation biomédicale du religieux dans l’hôpital
. Lumen Vitae, Brussels.
Kaulio, M.A. (1998). Customer, consumer and user involvement in product development: A framework and a review of selected methods.
Total Quality Management
, 9(1), 141–149.
Kimble, L. and Massoud, M.R. (2017). What do we mean by Innovation in Healthcare.
European Medical Journal
, 1, 89–91.
Le Galès, C., Bungener, M., Groupe Capabilités (2015).
Alzheimer : préserver ce qui importe. Les “capabilités” dans l’accompagnement à domicile de la maladie
. Presses Universitaires de Rennes, Rennes.
Martinez-Perez, C. (2013). L’usage des plans de dessin industriel et la régulation du travail ouvrier.
La nouvelle revue du travail
, 3 [Online]. Available at:
https://hal.univ-reims.fr/hal-02108619v1
.
Niitamo, V.P. and Leminen, S. (2011). Living Labin historia. In
Innovoi(tko) yhdessä asiakkaittesi kanssa-näkemyksiä Living Lab-toimintaan
, Nyström, A.-G. and Leminen, S. (eds). Painosalama OY, Turku.
Pomey, M., Flora, L., Karazivan, P., Dumez, V., Lebel, P., Vanier, M., Jouet, E. (2015). Le “Montréal model” : enjeux du partenariat relationnel entre patients et professionnels de la santé.
Santé Publique
, HS(S1), 41–50.
Reynaud, J.-D. (1997).
Les règles du jeu. L’action collective et la régulation sociale
. Armand Colin, Paris.
Scholl, I., Zill, J.M., Harter, M., Dirmaier, J. (2014). An integrative model of patient-centeredness. A systematic review and concept analysis.
Plos One
, 9(9), e107828 [Online]. Available at:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0107828
.
Ségard, E. (2022).
Le transfert des innovations dans le domaine du handicap – Quelles approches opérationnelles pour soutenir le transfert sur le terrain
. FIRAH, Paris.
Silva, H., Lehoux, P., Miller, F.A., Denis, J.L. (2018). Introducing responsible innovation in health: A policy-oriented framework.
Health Research Policy and Systems
, 16(1), 1–13.
WHO (2023). WHO Innovation Hub [Online]. Available at:
https://www.who.int/teams/digital-health-and-innovation/who-innovation-hub
.
Notes
Introduction written by Corinne GRENIER, Luigi FLORA and Frédéric PONSIGNON.
1
EHPAD: accommodation establishment for dependent elderly people (or medicalized nursing home) specific to France.
2
PROMs: Patient Reported Outcome Measures; PREMs: Patient Reported Experience Measures.
