Altering Frontiers. Группа авторов
Partnership differs from models of engagement in which leadership is provided exclusively by professionals: information to patients by professionals; consultation by survey, interview, focus group or advisory committee; and ad hoc participation of patients and members of the public in a working group, citizen panel or deliberative meeting in which leadership is provided by professionals.
The partnership is also distinct from engagement approaches in which the leadership is assumed exclusively by patients taking the initiative to inform or consult with professionals on an ad hoc basis. Partnership is built on a relationship of mutual learning and influence within organizations, rather than one in which patients “outside” the healthcare system attempt to influence professionals “inside”. The partnership is therefore different from advocacy or activism relationships where patients and professionals confront each other in a dynamic of confrontation (Flora 2012). This model has not only been adopted by the CEPPP and its partnership school in North America11, but also in several European countries.
Far from being copied, it actually adapts to the context. In France, for example, a grafting of this model in the spirit of Nice gives rise to the emergence of a “UniverCité” of care (Ghadi et al. 2019). It is organized around different modalities of action, for example:
1 – popular and citizen education system;
2 – action-training seminars for learning and doing together;
3 – actions carried out by the Centre d’innovation du partenariat avec les patients et le public (CI3P). The CI3P brings together patients and their families and integrates them into medical education, healthcare and research environments as part of co-design initiatives, including new technologies.
Citizen education meetings are oriented toward health issues and challenges, through the action of the Maison de la médecine et de la culture (MMC). It is a popular university that raises awareness and questions the representations of citizens, whether they are patients, relatives, health science students, practicing professionals, decision-makers or those who have to fulfil several of these roles. Two co-learning modules are associated with this, in which all parties can act, learn to practice and practice together. It is this combination that makes the concept of the “UniverCité” of care relevant and effective. It is therefore from the initiative of a medical school open to citizens that a first step toward the social responsibility of this type of institution is organized. These modules are, on the one hand, an annual international seminar in the field of narrative medicine open to all citizens and, on the other hand, training in the art of care in partnership with the patient, offered both in the initial study courses and in continuing education at the Faculty of Medicine (some seminars, however, are held in various locations in the city). As for CI3P, it is a new entity of the Faculty of Medicine of the University of the Côte d’Azur (Nice) which, as in Montreal, brings together patients, family members and patienthealthcare professional partnership tandems. The members of this center have already co-designed, with patients, tandem teaching for medical students in their initial curriculum at the CHU (Nantes university hospital) and have invested in various physician research groups and interprofessional collaboration (Figure 1.7).
Figure 1.7. Systemic transformation practice. For a color version of this figure, see www.iste.co.uk/grenier/frontiers.zip
This moving ensemble, originating from the city, demonstrates the complementarity of knowledge and is oriented in the care(s) according to a paradigm of reciprocity from which contributing research will allow a desired systemic mutation.
However, if this “UniverCité” of care is the first organization in France with this type of partnership, it is not the only one. There is, for example, an initiative in
Rennes, France, coordinated by the public health physician Pascal Jarno, who is responsible for coordinating the improvement of professional health practices in Brittany (CAPPS) in association with a collaborator from the Canadian CEPPP. Other examples include the Savoirs Patients association, mandated by the ARS Occitanie, which has carried out an inventory of co-construction initiatives based on the vision of partnership with patients developed by the Montreal model, or the creation of the Centre national de ressource et de résilience (CN2R) in Lille, which opened in 2019, with a partnership unit in its management structure, and which has rapidly created a community of people suffering from psycho-trauma to co-design the implementation of its missions.
However, these companies develop while maintaining their local specificities. For example, we can note the implementation of patient trainers in the teaching of general medicine at the Bobigny Faculty of Medicine in the Paris region; it has chosen to mobilize only patients representing users and has preserved the relational model of the patient-centered approach, unlike the approach implemented in Montreal – although methodologically largely inspired by it. It is this model which, for the time being, is being adopted by the BEPP of the AP-HP, which does not appear to be the choice of Rennes, which is starting from the existing situation to develop it locally. Other attempts to grasp this model are under way in various European countries, such as Italy: since 2013, training in the teaching of family medicine integrates this approach at the Faculty of Medicine and Surgery of Modena. In Belgium, it is at the Free University of Brussels, under the impetus of the Institute of Nursing Sciences and the Department of Public Health, that teaching and research are organized according to the patient partnership. In Liège, a team of researchers, under the impetus of Benoît Petre, is organizing a research partnership between Belgium, Luxembourg and the University of Nancy based on the Montreal model. Switzerland is not to be overlooked with companies initiated by the Geneva (GHUG) and Lausanne (CHUV) hospital centers, through the Hôpital ami des aînés (elderly friendly hospital) project, and by the Réseau santé région Lausanne (RSRL) through the Anticipated Care Project (Projet anticipé de soin, PAS), which aims to accompany patients toward self-determination in the canton of Vaud.
However, if the Montreal model does exist, it is not the result of a rupture but of a new stage (Karazivan et al. 2015), as presented in the continuum and implicitly exposed in the introduction in view of the inflation of publications on the different forms of patient mobilization; it is the extension of a current, part of a set of innovations that are part of the duration of representations and practices. The CEPPP has also listed a certain number of resources12 and other tools for evaluating collaborative practices, or even partnerships, developed by other currents; it is a real toolbox13, accessible on the Internet.
If the Montreal model seems to be the most accomplished, it is therefore far from being the only one and it can be considered as a legacy of a fruitful entity. It encompasses the achievements of patient movements invested in the fight against AIDS, and also the socialization of knowledge of people living with mental disorders through the “Recovery” movement. Quebec has largely integrated it into its approach thanks to the Association québécoise pour la réadaptation psychosociale (AQRP). Since 2006, the AQRP has been training and accompanying peer helpers integrated into care teams under the leadership of the provincial Ministry of Health, as an extension of a trend born in the United States and much studied in Minnesota. In this state, a program (Minnesota Program 1950) in the field of addictions 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