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As illustrated in Figure 1.1 on the continuum of patient engagement, the care partnership with the patient stemming from the Montreal model can be seen as one of the most innovative practices in collaboration between patients, family members and the public.

Figure 1.1. Continuum of patient engagement modalities

This approach places more emphasis on the sharing of power and responsibility between patients and professionals (from “care for” to “care with”) than patient-centered approaches as deployed in care organizations, as presented in section 1.3. This approach proposes that the patient be considered as a caregiver and, consequently, as a full-fledged member of the healthcare team (Karazivan et al. 2015). It therefore integrates the capacity of patients and their relatives to produce care (Coulter 2011). Patients are recognized for their experiential knowledge of living with the disease (Jouet et al. 2010) and the skills they mobilize (Flora 2012, 2015).

As such, they are considered legitimate persons to make the decisions best suited to their life, in collaboration with health professionals (whom we can no longer call caregivers). The patient is perceived as an individual (indivisible)⁷ and is progressively accompanied throughout his or her care journey to make free and informed health choices and take the care decisions that seem best suited to him or her. To do this, his experience of living with the disease and his skills are recognized as contributing to the care that concerns him. Thanks to the skills acquired through therapeutic education and reflexivity based on their own experience (Flora 2012, 2015), patients can strengthen their self-determination and self-management capacities.

Figure 1.2. The continuum of care practices. For a color version of this figure, see www.iste.co.uk/grenier/frontiers.zip

This innovative model (Karazivan et al. 2015; Pomey et al. 2015) is the result of the integration of patients into a Quebec faculty of medicine, thanks to the dean of this faculty, Jean Rouleau, and a patient, Vincent Dumez, who is also a specialist in change management in the faculty of medicine of the University of Montreal (Flora 2012). From this innovative initiative was born a model of co-construction that enabled the emergence of this model launched to enable the medical profession to adapt to the cascading mutations that physicians and healthcare systems have to face (Figure 1.3).

Figure 1.3. Different approaches to care. For a color version of this figure, see www.iste.co.uk/grenier/frontiers.zip

On the theoretical and conceptual level of the “Montreal model”, the partnership focuses on the recognition of experiential knowledge of patients (Flora 2012; Karazivan et al. 2015; Pomey et al. 2015), caregivers and citizens. This knowledge, derived from living with the disease, from experience of care and services or from living in the community, is seen as complementary to the knowledge of healthcare professionals (whether clinicians, managers or public decision-makers).

They are anchored in a vision of partnership whose essence is at the level of: (1) the individual care relationship (micro level) (Pomey et al. 2015), which is the basis for partnership interventions between patients and healthcare providers (individual and community members, peer associations and health professionals); (2) healthcare⁸, teaching and research organizations (meso level): and (3) government agencies (responsible for developing public policy) (macro level) (Pomey et al. 2015).

Figure 1.4. Patients’ skills in frame of reference. For a color version of this figure, see www.iste.co.uk/grenier/frontiers.zip

On the methodological level, the implementation of the partnership at the meso and macro levels, it is through the identification of the experiential knowledge of patients mobilized through skills that the partnerships were organized (Flora 2012).

It is on the basis of a repository of patient partner skills that the means of identifying patients with experiential knowledge to be mobilized according to the situation have been developed (Figure 1.4) (Flora 2015, p. 58).

At the micro level, in order to support a culture of partnership care, courses on interprofessional collaboration in partnership with the patient have been integrated into initial training at the University of Montreal in Quebec (Vanier et al. 2014)⁹.

Thus, during the first 3 years of the program, 14 health and psychosocial science professions were taught the five competencies of the reference system that people living with one or more chronic diseases develop. At the same time, the partnership was developed during the course of an interprofessional collaboration competency framework (Figure 1.5) (Raynault 2020).

These cross-references of reference systems integrated during the training of professionals gradually entering the healthcare environment made it possible, with greater frequency, to gradually support patients in making free and informed choices and in assuming them on a daily basis (self-determination), both in the care relationship with the various care providers and in the management of their lives (self-management). To enable the development of this culture of care in partnership with the patient, institutions have been created to support this process.

Figure 1.5. The competence framework for collaborative practice and patient partnership (source: DCPP & CIO-UdeM 2016a, p. 5)

After the creation of an entity mobilizing patients and their knowledge starting in 2010¹⁰ at the Faculty of Medicine of the University of Montreal, a Canadian Chair on partnership with patients and the public was awarded to Dr. Antoine Boivin. This pan-Canadian initiative has led to the creation of a Center of Excellence for Patient and Public Partnership (Centre d’excellence du partenariat avec les patients et le public, CEPPP), combining the research chair and the DCPP.

The CEPPP’s intervention model is currently primarily at the meso and macro levels (development of partnership relationships between patients and health professionals at the level of community, teaching, care and research organizations, for example). However, its goal is to foster partnership in individual care relationships at the micro level (e.g. shared decision-making and support for chronic disease self-management between patients and clinicians). To meet this objective, an analysis was carried out to determine the level of engagement between patients and professionals; it shed light on the modalities needed by teams and organizations wishing to move toward an optimal partnership, while taking into account the fact that relationships are dynamic and can change over time (Figure 1.6) (Boivin et al. 2017, p. 16).

Figure 1.6. Distinctive record of the nature of patient-professional relationships

The partnership is a model of reciprocal engagement between members of the public (patients, family members and citizens) and health professionals (clinicians, managers, researchers and decision-makers). The partnership is characterized by the co-leadership of common actions, co-construction (of the understanding of the problem and the solutions) and co-responsibility (in relation to the results of the actions carried out jointly).

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 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).