has already been designed, inspired by the Alcoholics Anonymous model, initiated in 1946 and implemented in the 21st century in some 40 countries, including France, through the APTE center opened in 1994 (Flora 2012, pp. 114–115).
In both cases, the aim is to mobilize peers in multi-professional teams. In the field of addictions, the range of individuals or groups supported by this system has largely developed toward all forms of addiction, with or without products. In the context of people living with mental disorders, various programs exist throughout the world; these are programs that have a strong positive impact on users, as summarized by Patrick Le Cardinal, a psychiatrist who declared himself to be living with mental disorders, in a review of the literature (Le Cardinal et al. 2013).
To make the mechanism more explicit, consider the example of the Housing First program. Originating in the United States, it is now being rolled out in 14 countries, including France, under the name “Housing First”. It is the extension of an experiment initiated in Marseilles through the employment of former homeless people in mobile care teams for street people. After being rolled out in large conurbations, since the end of 2016, this approach has been part of a policy that has been rolled out nationwide and is gradually being extended to medium-sized cities. In practice, this approach is based on the creation of multidisciplinary teams of medico-social professionals associated with one or more peer helpers, known in France as “peer health mediators”. It postulates that people, including those who are sustainably homeless, have the skills to access and maintain housing. It proposes direct access to housing as a prerequisite for access to rights, care and social and civic integration. Peer health mediators in France are now trained prior to university through training courses initiated by the WHO Europe Collaborating Center for Mental Health based in Lille and universities (Paris 8, Paris 13, Lille, Marseille) or by associations to which the regional health agencies (agencies régionales de santé, ARS) have delegated this training. Mission – for example, the Federation of Solidarity Actors Burgundy-Franche-Comté for the ARS of this region, which initiated a training program in early 2019. More broadly and beyond the public concerned by these initiatives, some universities in France have been investing in patient training since 2009 with a national law on TPE. A concept of “patient university” initiated in 2006 in Hannover, Germany, and adapted in France with its own specificities. The first patient university was opened in 2009 at the Faculty of Medicine of the Pierre and Marie Curie University. It takes the form of training courses in which all healthcare and medico-social professionals as well as patients are trained in TPE.
This type of university has since multiplied (Paris, Marseille and Grenoble) according to different modalities. They have had the consequence of initially pushing other TPE training courses to integrate patients before opening up to other themes, according to a diverse panel of commitments, some of which train and invite co-construction. Whether or not they are co-designed from the outset in their engineering with patients and health professionals, they generate in healthcare settings as many forms of intervention that can be placed in the categories proposed in Figure 1.1 (Pomey et al. 2015). Universities, through medical schools and other paramedical training institutes, are currently working to involve patients. All parties claim the need for this type of approach: the national conference of deans who, in April 2019, commissioned a physician to carry out an inventory of the situation and coordinate action; the National Association of Medical Students of France (Association nationale des étudiants en médecine de France, ANEMF), which has issued recommendations on the subject and is campaigning for the introduction of teaching with patients; or a group of healthcare stakeholders and users’ and patients’ associations who drafted the charter Associons nos savoirs (let us combine our knowledge).
1.5. Conclusion
While the experiential knowledge of patients and users has become a social fact, its recognition in France is an ongoing process. In fact, although from the beginning of the 21st century, the voice of users has been put forward at the regulatory level – through a framework law of 2002, followed by contributions to each framework law until a national action law on therapeutic education (TPE) in 2009, experience has only recently begun to be taken into account globally, beyond the epiphenomenon. We have been able to illustrate the process by which various experiences have mobilized various forms of experiential knowledge of users/patients, most often from abroad.
However, the challenge currently lies in the capacity of the health system to allow the widespread use of knowledge for large-scale use, within the framework of a partnership; a widespread use that allows, while respecting invariants that guarantee homogeneity and quality of care, the preservation of a plasticity and flexibility that encourages appropriation and allows for a diversity of local adaptations that preserve the particularity of the environments and populations that reside there. This process, as we have explained, is a major contribution to the re-establishment of the healthcare system, particularly in terms of understanding its complexity. Our societies and healthcare systems are facing several fundamental transformations: epidemiological, with the explosion in the number of patients with chronic generational diseases due to the aging of the population; organizational, with the re-composition of power relationships and the Fourth Industrial Revolution brought about by the advent of digital technology.
The mobilization of patients’ experiential knowledge and its translation through knowledge of use in co-construction, collaboration and partnership will contribute to the management of these transformations. All stakeholders in the health system need it.
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