have appeared to be a satisfactory solution. By asking a radiologist to deal only with x-rays or a surgeon to specialize in the surgery of only one part of the body, a care facility ensures that the expertise will be maximal and that the patient’s care will be optimal.
However, it is only recently, with the increasing complexity of care and support (chronic diseases, aging of the population), that the coordination of many stakeholders in a multi-professional approach (different doctors, other health professionals but also patients themselves) has become necessary, revealing even more the restrictive limits of this compartmentalization. Today, when we think about the decompartmentalization of health organizations, it is necessary to also think about organizational devices that will enable the maintenance and the deepening of the expertise of all the professions and expertise (also known as lay) in the field of health and healthcare.
This book, which offers a multidisciplinary and multi-level analysis of current innovations in healthcare systems, had to begin with a reflection on the changing roles and skills of the stakeholders, those who, on a daily basis, act on the healthcare system.
Among these stakeholders, we wanted to analyze first the organizational innovations that are developed around the patients themselves. Although they are the main beneficiaries and stakeholders in the health system, it has long been known that their knowledge and experiences are ultimately difficult to be taken into account by health systems where, often, professional logics dominate.
This section on the players opens with an analysis of the experience of the UniverCité du Soin in Nice by Luigi Flora (Chapter 1). This network makes it possible to work, it seems, on an equal footing – patients, health professionals, caregivers, users and civil society. Its objective is to enable the development of experiential knowledge about care, particularly about chronic diseases. This experiment describes concretely the forms and effects of this “empowerment” of patients, users and civil society.
Chapter 2, proposed by Philippe Mossé, analyzes the new skills that emerge among health professionals as a result of this strengthening of cooperative work (between professionals, with patients and with other users of the healthcare system). The case of advanced practice nurses is a particularly good illustration of the effects of this organizational innovation. In particular, this case highlights the fact that, to be complete, the analysis must go beyond the case of individuals alone to position them within broader frameworks such as those of professional spaces.
Finally, an identical logic is found in the contribution of Bertrand Pauget (Chapter 3) who looks at communities of practice of volunteers in the care of the elderly in the Swedish care system. The analysis clearly shows that the long-term motivation of charitable workers depends on their inclusion in collectives – in this case communities of practice – which enable them to build a sense of purpose for their actions and to disseminate the most effective practices.
References
Alter, N. (2011). Comment les dirigeants des organisations peuvent tuer l’innovation ? Gestion, 36(4), 5–10.
Bucher, S. and Langley, A. (2016). The interplay of reflective and experimental spaces in interrupting and reorienting routine dynamics. Organization Science, 27(3), 594–613.
Currie, G., Lockett, A., Finn, R., Martin, G., Waring, J. (2012). Institutional work to maintain professional power: Recreating the model of medical professionalism. Organization Studies, 33, 937–962.
Gherardi, S. (2008). Aujourd’hui les plaques sont molles ! Revue d’anthropologie des connaissances, 2(1), 3–35.
Robelet, M., Serré, M., Bourgueil, Y. (2005). La coordination dans les réseaux de santé : entre logiques gestionnaires et dynamiques professionnelles. Revue française des affaires sociales, (1), 231–260.
Weber, M. (2003). Économie et société. Pocket, Paris.
1
Recognition of Patients’ Experiential Knowledge and Co-production of Care Knowledge with Patients and Citizens in the 21st Century
1.1. Introduction
The expectation of populations to participate in subjects that concern them is a key fact of the 21st century; the health field, a sensitive subject, is only one example. From the emergence in the first part of the 20th century, through the mobilization of citizens and the creation of popular epidemiological approaches (Brown 1987), to participatory research mainly in the environmental field (Houillet 2016), or more specifically in the field of health today, many communities of citizens have initiated practices that call for them to act, actions that have opened the way up to co-construction. It is a continuum organized from initial collaborations through the mobilization of citizens in the face of local intoxication due to industrial pollution, through the reaction of populations affected by the HIV/AIDS pandemic through the development of the Denver1 Principles, which constitute real collective, individual and interpersonal data.
This movement in favor of patient and user involvement, promoted for example in France by the law of 4 March 2002 on patients’ rights and on the quality of the health system, establishing a real framework for health democracy, is part of an international movement with major implications for contemporary health systems, partly demonstrated scientifically by the increase in the number of articles published over the last 20 years (Boote et al. 2002; Crocker et al. 2018). A wide variety of co-constructing tendencies have emerged from this change. These trends involve patients, users, citizens and all the stakeholders and institutions that make up health systems, according to different approaches (theoretical, conceptual and methodological).
Since Angela Coulter (2011) identified that 98% of the hours of care given to a person with chronic diabetes is provided by the patient and his or her family, these strategies have been of increasing interest to decision-makers in healthcare systems and their organizations. This English researcher has in fact defined the annual production of care in the context of the chronicization of patients.
Chronically ill people who, depending on their illness(s), spend an average of 5 to 10 hours a year in care with health professionals, while in that time, they and their loved ones spend up to 6,250 hours of care. This knowledge of patients has become a social fact (Durkheim 1988; Flora 2012; Jouet 2014). This chapter therefore deals with what is being organized as a consequence of this ongoing transformation in the organization of our societies as an extension of the changes largely shaped by the rise of science and more particularly of technoscientific approaches in the field of health (Jouet et al. 2010).
1.2. From “empowerment” to the “patient revolution”, an international trend
With the medical model, which can be described as “organic”2, imposing itself in the institutionalization of care in Western countries, and relegating the educational dimensions of care to the background, at the end of the 20th century and because of the link between prophylactic policies and the emergence of patient knowledge, it was called into question by the modification of the place of patients’ knowledge in the healthcare system. As new figures for patients and citizens who disseminate this knowledge are increasing in the 21st century, it is because of the profitability
