The Engagement Conundrum of French Users
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The French model of user involvement is characterized by a strict national regulatory framework which applies identically across the territory. In addition to a solid structure for community organizations, designated user representatives are present in institutional bodies at regional and national levels. In addition, France has endorsed a strong policy on therapeutic education by law. That said, the goal of changing care practices and the organization of care in daily life has yet to be achieved, given that the impact of community involvement was mainly felt at governance levels of the health system and its institutions. The remaining challenge is to integrate the experiential knowledge that patients draw from care experiences and organizational procedures and to promote shared decision-making for treatments and diagnostic procedures, in other words all elements that affect people’s daily lives.
KeywordsHealth democracy User representatives Haute Autorité de Santé Therapeutic Education for Patients General Assemblies for Health Users’ Commission
In France, the state is primarily responsible for steering and regulating the health system. It acts as the guarantor of public interest and protector of population health at central and regional levels through decentralized Regional Health Agencies called Agences régionales de santé (ARS). Each region’s ARS is a unique health authority (state + social insurance), independent of local elected representatives (Regional Council [Conseil Régional]). At the territorial level, responsibilities are shared with care providers, while an insurance system—which includes a compulsory health insurance scheme (for employers and employees)—finances the health system. Social insurance finances two-thirds of health expenditure, the state and local authorities finance about one-fifth, while private funding covers 15 per cent (DREES 2017). Health expenditure in France amounted to 271 billion euros in 2017 (DREES 2017) or 11.8 per cent of country’s GDP.
The French population consists of 67 million inhabitants spread across a 550,000 km2 territory, of which three-quarters live in urban areas. They are served by 226,000 physicians, 661,000 nurses, 88,000 massage-physiotherapists, 23,000 midwives distributed across the territory, within practices or hospitals, working as employees or under fee-for-service arrangements (DREES 2017). With one of the top high-performing health systems in the world in terms of access to care (almost 100 per cent of its population is covered), France’s overall health indicators are positive and, relative to OECD Countries, it boasts the lowest user fee burden and one of the highest life expectancy rates (79.2 for men and 85.5 for women) (OECD 2017). That said, male mortality remains relatively high (HCSP 2017). Death rates in general are decreasing, regardless of the cause of death, and this is particularly true for cancers, despite increased incidence due to improved diagnoses and the impact of screening. While life expectancy in France is particularly high, premature mortality (linked to risk behaviour such as alcohol consumption, smoking, suicide, road accidents, etc.) is higher relative to other OECD countries (HCSP 2017). This could very well indicate lack of prevention. Moreover, mortality inequalities are particularly notable and persistent between men and women, among territories, and among social groups. This situation led health authorities to focus on two recent texts (the National Health Strategy in 2016 and Ma santé 2022 in 2018) with more emphasis on prevention and the involvement of patients and their representatives.
Like other Western countries throughout the twentieth century, France was struck by the emergence and affirmation of users seeking a rightful place within the health system, mainly through the mobilization of community organizations (Pomey and Ghadi 2009).
The French model of user involvement is characterized by a strict national regulatory framework which applies identically across the territory. In addition to a solid structure for community organizations, designated user representatives are present in institutional bodies at regional and national levels. That said, the goal of changing care practices and the organization of care in daily life is yet to be achieved, given that the impact of community involvement was mainly felt at governance levels of the health system and its institutions. The remaining challenge is to integrate the experiential knowledge that patients draw from care experiences and organizational procedures and to promote shared decision-making for treatments and diagnostic procedures, in other words all elements that affect people’s daily lives. To take on this challenge, the model of democracy in healthcare has been evolving, not only to mobilize new actors in the creation of modalities, which can be adapted to as many people as possible, but also to move towards Health Democracy as reminded by the Minister of Health in September 2018 (Ministère des Solidarités et de la Santé [Ministry of Solidarity and Health] 2018).
After a brief overview of user mobilization history in France, including the description of the country’s current health system, the following section will present positive lessons and limits drawn from health organizations, the national agency in charge of care quality and safety (la Haute Autorité de Santé [French National Authority for Health]) and the relationship between health professionals and patients as part of therapeutic education development. The chapter will end with concrete user–professional co-construction examples which illustrate changes that are in progress.
Democratic Impetus: Mobilizing Community Organizations to Defend Rights
User mobilization in healthcare is nothing new. As in other countries, user mobilization manifests itself via support between patients in parallel with professional and organizational interventions and a structured supply of care and support by directly concerned users or their relatives. User mobilization, partly invisible to professionals, took on a new dimension with user engagement in HIV during the mid-1980s.
From the creation of Alcoholics Anonymous in the early twentieth century (1934), to the extension of the first recovery movement in mental health based on mutual assistance interactions, information sharing and training between patients (1937), peer training eventually came about (Jouet et al. 2010) with the implementation of self-, co- and eco-training processes (Pineau 1989).
In France, the influence of community organizations is deep-rooted and decisive in social and medico-social sectors which support people in precarious situations and the protection of children. The medico-social sector concerns services and institutions which support elderly people in situations of dependency and people with disabilities. In the health sector, particularly, mobilization around AIDS in the 1980s marked a crucial step in recognizing the place of community organizations in public and scientific discourse.
Indeed, in the medico-social sector, a structure for the supply of care and support surfaced between the two world wars. At that time, the state entrusted parent or disability groups with the task of managing structures for people with disabilities. Community organizations, such as the Association Française des Familles (AFF, [French Association for Families]) or the Union Nationale des Associations de parents et amis de personnes déficientes intellectuelles (UNAPEI, [National Association of Groups representing Parents and Friends of People with Intellectual Disabilities]), were created in a hybrid form, associating directly concerned people with professional organizations. This cohabitation led community organizations to regularly question their positioning, more specifically the balance between their “users” and “professionals” components. This form of co-management accelerated with the establishment of the welfare state model after 1945 and led to a permanent dialogue which culminated in a 1975 law on the adaptation of society to people living with handicaps.
On the other hand, in the health sector, it was not until the 1990s—and the tainted blood scandal—that HIV/AIDS community organizations mobilized politically to demand recognition of individual and collective rights of healthcare users. The HIV/AIDS pandemic added a fourth axis to the professional relational triangle of user health: (1) mutual assistance, (2) information sharing, (3) training and (4) involvement of concerned people in decision-making. This fourth axis developed, thanks to patient mobilization conducted through effective advocacy and taking full advantage of what is coined as the “Information Society” (Flora 2012, p. 81).
Furthermore, this resulted in citizen mobilization in the form of États généraux de la Santé (States-General, or General Assemblies for Health) which were forums where citizens and professionals met to discuss specific pathologies. The first meetings concerned HIV/AIDS in 1990, rare diseases in 1995 and cancer in 1998.
As of 1995, this process turned into a structure built around the creation of an association which united all user community groups, also known as the Collectif inter-associatif sur la santé (CISS, [Inter-Associative Health Collective]). Initially created out of 15 community groups in 1996, the CISS gradually opened its doors to more members and currently comprises more than 40 community organizations (link website http://www.france-assos-sante.org/). The specificity of the CISS is its capacity to bring together organizations representing patients, people with disabilities, consumers and families. The collective gradually became an interlocutor with public authorities to partake in early reflections on user representation in health organizations. That same year, the role of the CISS was recognized in a law meant to modernize the health system.
Meanwhile, France was dealing with health scandals such as the tainted blood scandal (Fillion 2005) or the sports clinic case (Carriburu 2009) in which many people had contracted nosocomial infections. These high-profile cases led victims’ associations to organize and question the organization of services and professional practices which, evidently, did not guarantee satisfactory levels of patient safety. Due to their inability to prevent incidents or accidents, confidence in public authorities and health professionals was deeply shaken and questioned.
In 1999, the General Assemblies for Health (États généraux de la Santé) provided an opportunity for users to highlight their expectations in terms of information, support and participation in choices of direct concern and reflects a time of know-how transmission beyond mere pathological aspects and the search for common ground. As a result, the prime minister at the time committed to drafting a law on patient rights. In this context, the CISS became a key player and participated in drafting the law, which was published in March 4, 2002. This law firstly deals with the recognition of individual rights, such as rights to information, respecting dignity and refusing care. It also endorses the health democracy model by introducing the obligation to include user representatives at governance levels of the health system and health institutions. It follows another law, published on January 2, 2002, which laid the foundation for creating individual and collective participation spaces in medico-social institutions. On the one hand, this law enables individualized projects which compel professionals to start working from a patient’s life projects and expectations. On the other hand, the Social Life Council (Conseil de la vie sociale) was created to structure and integrate user participation in daily life and collective decisions within health organizations. The Social Life Council is a place for debate and exchange among representatives elected by residents, relatives and professionals of the health organization or service. This first impetus given by the law of January 2002 was reinforced by the February 11, 2005 law regarding equal opportunities and citizenship for people with disabilities.
Thus, in France, the law of March 4, 2002 on patient rights and health system quality has clearly introduced a process redefining the place of patients relative to their own care. It also strengthens health democracy by mobilizing citizens as users with the right to speak, or as of user group representatives with an approved presence in various strata of governance within health organizations and, more broadly, the health system. In health organizations, this materializes though user representatives now being part of executive boards (board of directors, etc.); the creation of a commission for user relations and care quality with an advisory role; the integration of user representatives into other specialized committees such as Nosocomial Infection Control Committees and Pain Control Committees.
In 2014, at the request of the health minister, a user representation assessment was conducted, and proposals were pushed to further user participation (Compagnon et Ghadi 2014). However, findings concomitantly demonstrated how user representatives lacked access to healthcare professionals and patients, as well as no true participation in decision-making, which ultimately highlighted the non-transformation of care practices and the absence of care being organized through user involvement. Moreover, some proposals were reintroduced in the January 26, 2016 Health System Modernisation Act, such as expanding the missions of user representatives in various aspects of care quality and patient safety (i.e. the need to strengthen the users’ place in the certification process of health organizations; participation in the reporting or analysis of serious undesirable events) and the incentive for organizations to produce user projects aimed at reinforcing collaboration with users and groups around priority topics. First and foremost, these topics must be considered as priorities by users, which include mistreatment prevention, information, organization of care for people with disabilities. The modernization act also changed the name of the community organization collective (CISS) by creating a national association of “approved community organizations” in health, named France Asso Santé (FAS). In continuity with the CISS, France Asso Santé now counts 76 national community organizations.
Therefore, France currently has a model which allows the imposition of users at almost all levels of the healthcare system. At the national level, users participate in the National Conference of Health and Autonomy (Conférence nationale de santé et de l’autonomie) as well as in the French National Authority for Health (Haute Autorité de Santé [HAS]). At the regional level, they participate at the supervisory board of regional health agencies and the regional health conference. And finally, they participate at the institutional level as well (see above).
However, the legal recognition of user representation—and more recently, the creation of a national association of approved health groups (FAS) as a main interlocutor financed by public authorities—led user participation to be often limited to technocratic activities, distant from actual care provision (Martinent 2017). Also, the question remains as to whether this recognition contributed, on the one hand, to transforming practices and organizations while, on the other hand, considering the point of view and experiences of users.
Building Real User Participation Beyond the Notion of Rights
In French-style health democracy, the focus has mainly been on defending “rights” and “representation” of community groups within governance but much less on patient “participation” or “engagement” at the individual level and in direct patient care. This observation can be illustrated not only by the way their involvement in the Haute Autorité de Santé (HAS)—the health agency responsible for care quality and safety—has been set up but also through the way projects related to therapeutic education in healthcare organizations were established.
From Isolated Initiatives to a Structured Approach of User Integration in HAS Duties
The HAS holds two main missions. The first one focuses on improving care quality, which includes preparing recommendations for good practice, producing quality indicators and accreditation. The second one regards the evaluation of health technologies, including drugs.
The HAS was involved very early in integrating user representatives (from regional health agency-approved community organizations) into most of its committees, with the exception of regulated committees, at least not until legal texts were modified in 2015. For example, users were integrated into commissions that assess drugs and health devices. From the outset, the HAS granted them expert status, with their own prerogatives and obligations, and appointed them individually for their expertise and affiliation to approved community organizations. They were compensated in the same way as other experts and were subject to declaring conflicts of interest and honouring the confidentiality of information shared during committees or working groups.
User integration into HAS working groups and processes has been uneven across directorates. For example, the Directorate for the Improvement of the Quality of Care has been more active in this regard than the one in charge of assessing health products and technologies. Beyond cultural differences, this integration gap can be explained by time constraints to which the latter directorate is subject in order to respond to marketing requests for new drugs or devices. In addition, user participation was limited to one or two representatives taking part in working groups. Therefore, their contribution turned out to be less visible.
The appointment, by the Health Minister, of a representative of patient groups to the highest governance instance of the HAS, known as the HAS College (Collège de la HAS), only occurred in 2017.
An uneven culture within the institution, mixed feelings about the interest in user engagement pertaining to HAS duties, and confusion in terms of project manager expectations regarding users, which contributed to misunderstandings.
Project managers did not feel the necessity of having a variety of user profiles to match user skills with project needs and expectations: for example, not waiting for political or strategic input from patients outside of patient groups or, conversely, not expecting community group leaders to share personal experience.
These observations led to a number of questions: what place should be given to user perspectives with regard to HAS duties and for what purposes? Under which circumstances should users be called upon? At what point in the implementation process should users be integrated? What methods should be set up to collect user perspectives?
A lexicon, which includes fact sheets, was written in order to propose different modes of user engagement and to better match method selection with desired objectives. In other words, the challenge is to evolve from just having one or two users sitting in a working group (overwhelmingly composed of professionals) to embracing methods such as interviews, focus groups or citizen juries.
A questionnaire was developed and proposed to interested community organizations to participate in drug/health technology medico-economic assessments run by the directorate in charge of those specific areas. Calls for contributions were regularly shared on social networks (Twitter, LinkedIn, Facebook …). Collected user feedback is incorporated into the assessment file (alongside the expert report) and discussed within committees responsible for issuing opinions.
To strengthen partnership between users and health professionals, a User Space is being created within the directorate responsible for improving the quality of care.
In addition, HAS invited applications for the creation of a Council for User Engagement in order to involve more patients and users in its work.
The work of these two directorates feeds the ongoing strategic project of the HAS, of which one pillar focuses on strengthening user engagement within HAS duties as well as equipping all involved professionals and health system users with ways to integrate users into their work at both collective and individual levels. In fact, in 2017, results from a citizen workshop were presented at the HAS Annual Symposium (Colloque annuel de la HAS) about the relevance of care (HAS 2015).
From Defending Rights to Improving the Organization of Care and Services in Institutions
The purpose behind having user representatives in healthcare institutions was to objectify and value their point of view in order to influence organizational modalities and clinical practices. First, this resulted in the presence of user representatives in political bodies (supervisory board, equivalent to boards of directors), technical bodies (such as the Committee Against Healthcare-Associated Infections (Comité de Lutte contre les Infections Associées aux Soins [CLIAS]), the Food–Nutrition Liaison Committee (Comité de Liaison Alimentation Nutrition [CLAN]) or the Pain Control Committee (Comité de Lutte contre la Douleur [CLUD]), as well as in a “user-dedicated body”. Initially, this body was termed the Conciliation Commission, then the Committee on User Relations and the Quality of Care, before finally being named the Users Commission (UC) (commission des usagers [CDU]).
The UC’s aim is to increase users’ share of voice and to integrate them into decision-making in order to defend their rights. Gradually, the commission’s role grew to ensure the consideration of user complaints as information sources, which could lead to quality improvements in care and services. The UC also takes part in various committees within health organizations (e.g. Committee Against Healthcare-Associated Infections, Food–Nutrition Liaison Committee, Pain Control Committee) or working groups.
Moreover, since 2014, as part of the certification process of health organizations, UCs are compulsorily consulted by experts during site visits, and 80 per cent of UCs participate in the development of the Compte Qualité (Quality Account), which is a document that summarizes the analysis and prioritization of care-related risks in health organizations as well as implemented measures. The Compte Qualité is sent to the HAS six months prior to on-site visits by experts. Such institutional-level participation recognizes the expertise of users and their representatives in risk assessment and implementation of measures for bettering quality and safety in care and services.
Even if the exact number remains unknown, between 6000 and 7000, user representatives from approved patient groups currently provide time, train themselves, learn to interact with managers and health professionals not only to assert their rights as users (patients, relatives or potential patients) but also to improve the quality and safety of care and services.
Unfortunately, user representatives still lack high social visibility. In fact, their existence and mission remain poorly known by the general public, patients or health professionals. While there is a legal obligation to develop “health democracy”, user representatives remain in the shadows. A report even indicates mistrust between professionals and user representatives (Compagnon and Ghadi 2014). Furthermore, their legitimacy is still not established, and the processing of UC letters of protest and complaints remains dissatisfying. Although user representatives are expected to read those letters for analysis, some health organizations limit access to them, that is, late deliveries—delivery once matters are already resolved; summaries in EXCEL tables—thus truncating the user’s full account of events; summaries of main causes—even though letters often contain multiple malfunctions that could eventually lead to complaints.
Additionally, direct access to user testimonials is also limited. For example, very few requests are made to meet directly with users to learn more about their experience, to allow users to meet with user representatives, or to invite users to mediation interviews when addressing user complaints.
In sum, few initiatives are currently organized to promote user representatives access to professionals—and even users—at the clinical level. Meanwhile, a certain number of user representatives believe that their connection to community organizations is sufficient to legitimize their position and knowledge at organizational levels. As a result, for years, the participation of many user representatives has been limited to commissions, away from clinical practice. Incidentally, they seem better known and recognized by directors of health institutions than by physicians or other health professionals. Moreover, user representatives are not well-known to the general population which ends up left with little recourse. Some user representatives struggle to move away from meeting rooms, while others encounter real resistance when trying to participate at clinical levels.
Train and integrate user representatives in commissions and get them to take part in all work stages (preliminary study of documents, exchanges with professionals and participation in the development, planning and implementation of measures);
Encourage user representative retention in health organizations to increase their long-term involvement;
Promote their role and function within organizations by highlighting their connections to community groups; and
Encourage co-construction between health professionals and users (Compagnon and Ghadi 2014) to provide a “fresh perspective” on themes concerning the quality and safety of care (cf. 3rd part).
For the time being, measures to promote greater user participation (in accordance with the 2016 law) have been implemented, such as the users’ commission, for which institutions are recommended to appoint a user as chair. The commission’s capacities have also been extended to include serious adverse event monitoring or soliciting yet-to-be-approved community groups. This allows users to expand their organizational influence beyond the issue of rights and therefore influence general internal policy as well as quality and patient safety policy. The 2016 law also provides for the possibility of building user projects within organizational projects in order to include themes that are deemed as priorities by users, such as abuse prevention, access to information, or organizing care to improve access for people with disabilities. In other words, the patient engagement model is evolving from a rights-based approach to a co-construction approach to finding solutions for the betterment of the health system.
Therefore, one of the challenges ahead consists in successfully articulating the “representative approach” of health democracy—which is still in its adolescence (17 years have passed since the 2002 law!)—alongside the “participative approach” geared towards individual users such as expert patients, patient trainers and resource patients born from the therapeutic education movement.
In Focus: User Houses (Maisons des usagers) in Mental Health or Oncology
“User Houses” emerged as a particular form of user participation in the operations of health organizations. The first User House was born in 1995 from the initiative of a militant healthcare worker who sought to develop democracy in healthcare institutions. During a public meeting, she invited neighbourhood residents to voice their expectations regarding their local hospital. More than one hundred people, including neighbours, community group volunteers and professionals, met for discussion. The outcome of this meeting was a User House, as facilities offered by the hospital’s director turned into a space of welcome, listening, guidance, and debate for all. In 2001, when the hospital moved and merged with two other hospitals—in what was intended to be the flagship of the AP-HP University Hospital Centre (Assistance Publique—Hopitaux de Paris)—the User House followed and relocated at the heart of the new premises.
In 2002, as part of a hospital project, the University Hospital of Nantes opened a User House after organising a citizens’ jury. Again, this project relied on cohabitation between citizens and community organizations. In 2003, the Sainte Anne Hospital Centre, specialised in psychiatry, opened its own User House to promote information access to patients and their relatives. As a community-based residency practice, meetings took place every afternoon of the week. The User House was built on modalities clearly aimed at inter-community group dynamics for the benefit of patients and the respect of their rights.
In support of User Houses, the Ministry of Health published a circular on December 26, 2006 which encouraged health organizations to multiply such initiatives while laying down principles and operating methods for the creation of User Houses or User Spaces. Since then, User Houses have increased in number and exist in more than one hundred health organizations. The dynamics, however, often remain difficult as user engagement varies depending on management support, the number of community organizations, commitment by professionals, and physical location. Moreover, dynamics related to care quality policy in health organizations often require more work as well. Some User Houses have begun to leave health organizations to move closer to the people.
A national federation of User Houses was created in 2014.
Therapeutic Education: From Red Tape to Greater Stakeholder Inclusion
In 2009, the Hospital, Patients, Health and Territory Act (Hôpital, Patients, Santé et Territoire [HPST]) provided a new framework for the participation of patients living with one or several chronic diseases. Indeed, in Article 84 pertaining to Therapeutic Education for Patients (TEP), the act encourages professionals to grant a new role to patients by strengthening their autonomy.
When drafting the act, the secretary general of the CISS and former president of the AIDES community organization, Christian Saout, stressed the importance of involving user groups in the therapeutic support of patients in collaboration with physicians. However, the drafted article, which was adopted by parliamentarians, ended up not being published in the official gazette, thus preventing its implementation.
To circumvent this limitation, other initiatives emerged such as the creation of Patient Universities within faculties of medicine in Paris, Marseille and Grenoble, as well as TEP training programmes open to patients and delivered in various formats (Flora 2013a).
That said, due to the funding mechanism in place, the programmes’ hospital-centred structure, a limited public health culture and the lack of trained professionals in patient participation, TEP training programmes turned out to be too hospital centric. In fact, these programmes fail to take interest in the patients’ living environment (contrary to the spirit of Article 84) and do not include real involvement from patients and their representatives. Simply put: all TEP programmes are devoid of patients.
Although TEP was thought to be emancipatory for patients, it mostly mobilized healthcare professionals who mainly worked on improving patient compliance. Rather than strengthening patient autonomy, professionals searched for ways to convince patients to follow prescribed treatments instead. A huge contributing factor to this is the fact that TEP remains within the hospital realm.
Nonetheless, despite these flaws, a movement is now in motion. The number of TEP programmes has multiplied depending on different modalities, and patient integration in programmes—as expert patients, patient trainers in targeted educational initiatives or even as resource patients—continues to grow progressively, though in varying degrees across the territory. Steadily, TEP programme funding from sources other than hospitals have led to the creation of programmes closer to patients’ needs and expectations which, despite a ten-year delay, finally tap into with the spirit of the HPHT Act, as illustrated in the next section. For example, the programme carried by “La Maison des Citoyens” of Rennes (collective of almost 50 associations) which obtained in 2017 a financing of the Regional Agency of Health for a programme outside the hospital, no specialty (all chronic diseases), on non-therapeutic topics.
A Second Wind Towards New Practices
Apart from the legislative context created since 2002, in addition to advances brought about by user representation and its limits, several initiatives were conducted officially or experimentally. Thus, new patient manifestations, alongside user representatives (by way of user community organizations), have been recognized since the 2000s, socializing their knowledge and playing a role beyond their own care within the different strata of the health system. These manifestations propose new forms of collaboration build upon the notion of peer emulation found in TEP.
User Representatives Depart for Institutional Bodies: Towards New Forms of Collaboration and New Methods
Learning Co-construction in the FORAP-HAS Working Group on “Well-Treatment”
In 2010, following the inclusion of a criterion on “well-treatment” (bientraitance) in the Federation of Regional and Territorial Bodies for the Improvement of Health Practices and Organisations (Fédération des Organismes Régionaux et territoriaux pour l’Amélioration des Pratiques et organisations en santé [FORAP]), the Federation and the HAS decided to create a special work group to address the issue. This working group first produced a guide and a set of tools to encourage the mobilization of health organizations. The guide promotes partnership with users as a fundamental characteristic of “well-treatment”. In 2012, the guide and tools were distributed to professionals and health organizations via the HAS and regional bodies (HAS 2012).
Two years after the guide’s implementation, the working group conducted a usage assessment which highlighted increased “well-treatment” awareness within organizations and usage mainly among paramedical professionals. However, paradoxically, users seemed to be excluded from measures taken to address the issue. These mixed results led the working group to revise its objectives and working methods (HAS 2015). Thus, the group insisted on the need to: (1) take into account the voice of patients and accompanied people to avoid situations of mistreatment and infringement upon the quality of care and patient safety, (2) working with patient groups and user representatives to implement a “well-treatment” policy and (3) make health professionals understand that it is nonsensical to work on issues of mistreatment and “well-treatment”—and more broadly, care safety and quality—without the target population (users).
The national working group welcomed five health system users, involving them in all phases of reflection and deployment. Indeed, initially, the group did not include user or patient representatives. This rectification revealed that the working group’s deliverables were too technical and that tools were not adapted to users’ needs. Therefore, measures were taken to encourage the adoption of a culture conducive to co-construction.
Regional and territorial bodies integrated patients into working committees for the Improvement of Practices, in consultation with the regional branches of the CISS/FAS. Two regions in France (Brittany and Pays de la Loire) have already set up such initiatives, while other regions are following suit as measures to provide better quality and safer care and to identify a user who could join the national working group.
A collection of short videos was produced to present: (a) “real” abuse situations with testimonials from different actors, professionals and users; (b) a joint analysis of causes that led to the abuse situation and (c) a joint definition of improvement measures. Each regional body currently identifies at least one situation and produces a short video.
As a scientific agency, beyond its participation in the national working group and internal changes for user and patient participation (see paragraph 2a), the HAS organizes events to (1) promote user participation in care safety and quality and (2) make it a central theme in France. The HAS 2016 Colloquium on “Patient Dynamics: Innovating and Measuring” highlighted ongoing research on patient engagement contributions at all levels of the system. Further, as part of the National Programme for Patient Safety (Programme National Sécurité Patient [PNSP]) with regard to patient engagement in patient safety (DGOS 2016), a seminar organized by the Health Ministry and the HAS (2016) unearthed potential ways to reinforce the patient’s role as a co-actor in care safety.
Creation of Joint User–Professional Committees
As mentioned previously, when the role of user representatives is strictly limited to sitting-in institutional bodies and committees, their impact is somewhat limited. Confining them in those roles keeps them away from clinical and organizational issues, despite attempts to involve them in the preparation of accreditation visits. In order to escape this unproductive situation, two initiatives have appeared: (1) the formation of joint “user–professional committees” which create new partnership spaces and closer relationships between professionals, patients and user representatives and (2) the recruitment of patients to take part in user–professional committees. In this case, recruited patients are not user representatives. Instead, they come from community groups which have ongoing agreements with health organizations. This allows expansion of the user recruitment pool.
To help illustrate these new forms of patient/user involvement, the following section will present two examples: one example from a health organization and another one from a Regional and Territorial Body for the Improvement of Health Practices and Organizations.
The Rennes University Hospital
At the time, the national context seemed favourable. On the one hand, the National Programme for Patient Safety (PNSP) and the FORAP-HAP working group for patient engagement in care quality were in effect. On the other hand, meetings with members of the Nursing Commission (Commission des soins infirmiers), representatives of the users commission and patient groups were taking place, which created a context where collective engagement between professionals and users became necessary.
Create a space for reflection and exchange
Begin a partnership between users and health professionals around the issue of patient pathways;
Define measures that would encourage user/community group involvement in processes designed to improve the quality and safety of care, as well as the promotion of patient rights
The Patient Pathway Charter
Patient Rights: trustworthy person and anticipated directives
Organizing visits for people accompanying children
The patient’s environment
Given the current orientations of the Ministry of Health, the Regional Health Agencies and the HAS, joint committees address the need to create a collective dynamic between users and professionals to improve health pathways and patient care quality. Joint committees revisit interactions between actors and define new alliances, the time between users/patients and clinicians rather than between user representatives and directors.
Thus, for instance, the Patient Discharge working group connects health managers and representatives from various services and patient organizations. Through meetings, they eventually learn how to work together, allowing them to develop common objectives based on existing best practices while proposing new individualized methods that involve patients and their relatives. In connection with the nursing directorate, the working group formalizes its recommendations and engages user–professional duos to raise awareness about these recommendations among different departments.
Brittany’s Regional Body: The Coordination Group for Improving Practices of Health Professionals in Brittany (CAPPS Bretagne)
Beyond the participation of CAPPS professionals in various national initiatives (PNSP seminar, FORAP-HAS working group, HAS strategic reflection, HAS colloquium, etc.), for many years already, users and professionals have been interacting to address issues of care, safety and quality.
At the governance level, two CISS Bretagne user representatives sit on CAPPS Bretagne’s scientific council. In addition, the regular exchanges with CISS Bretagne translate to regular presentations to its board of directors. And lastly, CAPPS intervenes at the CISS Bretagne general assembly for matters regarding care quality and safety.
At a national level, three user representatives from Brittany participate in the FORAP-HAS national working group, and at a local level, two representatives sit on a follow-up committee for care-related harm notification training.
In terms of concrete activities, patients participate in the organization of special science days (2007, 2011, 2016); the production forum-theatre training programmes on healthcare-acquired infection management (2008–2012) and in the working group responsible for establishing and following up on care-related harm notification training (2015–2018).
With regard to research, patients are engaged in research projects revolving around user representative involvement (2008, 2012), the place of patients and caregivers in chronic disease management (2014), and usage assessments of “well-treatment” tools developed by the HAS-FORAP group (2015–2018).
Moreover, CAPPS Bretagne, in affiliation with CISS Bretagne, offers support to professionals in health and medico-social organizations across the region to encourage the involvement of users and their representatives in various initiatives related to the promotion of care safety and quality (beyond patient rights). Operationally speaking, this means setting up and coordinating a regional working group comprising users and professionals from CAPPS Bretagne and CISS Bretagne; making an inventory of existing procedures in the region’s health organizations; promoting the pooling of existing tools and approaches for the involvement of users and their representatives in quality and safety approaches (such as identification of positive experiences); continuing existing measures (“well-treatment”, participation in the HAS-FORAP national working group, etc.); offering training for professionals, users and their representatives; organizing a user-themed annual science day showcasing users as actors of their own safety; creating a directory of user representatives and community organizations.
Last but not least, the operating principle remains identical to the one which guided all of regional efforts over the past ten years, namely, the co-construction of objectives and interventions by users and professionals, including implementation and assessment phases. To achieve this, CAPPS Bretagne added to its team a part-time project manager hired from a community organization. The objective was to integrate a “user” dimension to all projects (changing attitudes) and promote partnerships with all actors of the health system.
Beyond Links with User Representatives: User Partnerships Built Closer to Care
Patient involvement can include various elements. For instance, supporting other patients through care such as in therapeutic education or psychological support; improving care quality and safety, training or participating in research activities. Driven by actors in the field (i.e. users and health professionals within their respective organizations such as community groups, learned societies, institutes, committees), patient involvement often takes shape through various local interventions often undertaken by professionals from within a service or even in the context of singular physician–patient relationships. Mostly informal, these new forms of collaboration are rarely known to the rest of the organization, which raises the question of their visibility. Collaborations can be born either from healthcare professional initiatives or from patient group initiatives as evidenced by the two following examples.
Emerging Practices Coupled with Expectations from Professionals
Based on an assumption that many patient engagement experiences are little-known, a study was conducted in two university hospital centres in western France. The main objective was to take stock of initiatives that involved patients and their representatives to promote them and stimulate new projects.
The first learning from this study was the strong participation of professionals (over 550 respondents) and their relative enthusiasm towards the topic (more than 1000 patient partnership initiatives were reported). Nearly three out of four initiatives focused on care provision or support, mainly participation in therapeutic education programmes or care, quality and safety improvement activities (mostly the assessments of practices and organizational arrangements). One-third of these initiatives was framed by a charter or a mission statement. In almost half of the cases, participating patients came from patient groups and they underwent training in 10 per cent of cases.
Furthermore, the study highlighted a number of enabling factors that explained such levels of participation: health organizations which had a dedicated transversal unit for more than ten years showed more involved patients in therapeutic education programmes; health organizations with a joint user–professional committee reported more care, quality and safety initiatives; the perception of professionals towards the relevance of this partnership; community group engagement and the recognition of “patient representative” status; time allotted for proceedings; health professionals’ knowledge and training on patient expectations. In sum, this study not only revealed true willingness from professionals but also a need to properly equip them to facilitate the development of these innovative approaches.
More Peer Helpers
In the field of peer education for people living with chronic diseases, the example of the French Association of Diabetics (Association Française des diabétiques [AFD]) is significant both in terms of measures taken and its lack of recognition from other actors of the French health system. In 2005, the association, which has a solid knowledge base stemming from its helpline for people living with diabetes, decided through its board of directors to launch a training programme given by expert patients. Their goal was to act within the community, closer to the living environments of people living with the disease.
To design the training programme, the AFD turned to an association specialized in TEP, the French Association for Therapeutic Education and Development (AFDET), and to the first research laboratory specialized in therapeutic education and medical pedagogy at the University of Bobigny-Paris XIII directed by Rémy Gagnayre and Jean-François D’Ivernois, opened in 1978 to promote patient education and therapeutic education for patients (TEP). This first attempt at scientific collaboration failed on the grounds that, in patient education, medical knowledge must prevail and training must be delivered by physicians. Therefore, as decided by its board, the AFD sought help from a specialist in popular education, which led to the creation of training modules.
It was not until 2010, once professor Brigitte Sandrin-Berthon (2008) took charge of the French Association for Therapeutic Education and Development (Association Française pour le Développement de l’Enseignement Technique [AFDET]), that true scientific collaboration occurred. Hence, the training programme’s contents were assessed by peers (people living with diabetes) and built upon knowledge from both patients and physicians through shared learning. Also, it was based on years of work performed by the AFD, namely, keywords drawn from most frequently asked questions on the AFD helpline. Since 2015, there are ten modules on pathology and the environment, supplemented by a day of extended active volunteering and a five-day TEP training in a classroom, under the co-responsibility of AFD and AFDET. This original programme helped train thousands of expert patients.
Remarkably, this programme leverages a wealth of community organizations and is significant considering what is being organized in terms of peer education in France. Currently, due to internet-enabled access to information, many patients socialize their experiences and knowledge beyond collective movements, particularly institutionalized health agency-approved community organizations. For instance, since the 1990s (1994), there are Addiction Counsellors who welcome and supervise rehabilitation patients and draw their expertise from their own experience with addition (Flora 2015a, pp. 347–356). Also, since 2012, university-trained Peer Mediators in mental health (Flora 2013b) evolve within mobile teams to tend to peers or within Mutual Help Groups (Groupes d’entraide mutuelle [GEM]) in accordance with the WHO Regional Office for Europe (WHO/Europe) mental health collaboration centre framework.
In short, the peer support movement has developed through solidary—even commercial—endeavours to coach other patients using university training for TEP or coaching. The creators of Hospitalidée are a telling example. Based on their hospitalization experience, they propose a peer evaluation of the hospitality capabilities of health organizations. Although some new forms of intervention may liken to businesses rather than community groups, they still offer solutions to patients or propose new organizational methods that may impact the health system (Flora 2013b).
The Rise of User Teachers: New Forms of User Involvement for Training and Research Purposes
User Involvement for Training Purposes
For several years now, users have been sporadically involved in sessions dealing with patient rights or health democracy issues, mainly for nursing or managerial training. During those sessions, user representatives are invited to present and explain the ins and outs of the laws for which they fought. More recently, users have been included in physician and paramedic training programmes centring on the care giver–receiver relationship. They intervene frequently by way of testimonials to emphasize relationship issues and share their disease experience with professionals.
As a result of individual initiatives, patient interventions exist in nursing schools since 1992, in the faculty of medicine at Diderot University since 1995 and that of University of Paris-Sud (Paris XI) since 1997 (Jouet et al. 2010; Flora, 2012, pp. 43–47 et 76–103).
Programme for 4th year medical students from the Pierre and Marie Curie Faculty of Medicine initiated and renewed every year by the deans and vice deans (Flora 2012, pp. 216–219).
Programme for all 3rd year students of the Faculty of Medicine Claude Bernard Lyon-Est at the initiative of a philosopher faculty researcher; renewed every year since 2012; developed within the framework of Patient ACTors in Medicine Education (Patients ACTeurs de l’Enseignement en Médecine [PACTEM]) combining an initiative in two faculties of medicine—one in Lyon and the other in Saint-Etienne (Lechopier and Granier 2017).
Graduate courses on the care relationship at Paris-Est Créteil Val-de-Marne University (Paris XII) conducted by a user–professional duo.
Coursework for General Medicine Interns at Paris XIII University (University of Paris North), systematically conducted by a physician–patient duo (Gross et al. 2017a, b); based on a reflexive approach inspired by a similar initiative in Montreal (Flora 2012, 2015b; Compagnon and Ghadi 2014; Flora et al. 2016). The model was a remarkable success with medical teachers and gradually convinced the students as well. These initiatives piqued the interest of other universities as a network is currently under construction. With the goal of integrating patient trainers earlier into medical education, a medical thesis recently investigated the feasibility of implementing the Montreal model throughout the medical curriculum of a French medical school (Charoy-Brejon 2016).
Along those lines, in 2016, a report published by a working group under the Institute for Health Democracy (Institut Pour la Démocratie en Santé [IPDS]) referenced all initiatives in France (de Singly and Gaillaget 2017).
In December 2017, a seminar was organized following discussions between professionals and users involved in training programmes for the social, health and medico-social sectors. Entitled “Let’s combine our knowledge” (Associons nos savoirs), this seminar demonstrated the extent of existing initiatives. As part of ongoing efforts, a participatory initiative is underway with the aim of producing a text to which all organizations involved in initial and continuing education within those three sectors, including the National Agency for Continuing Professional Development, are invited to subscribe. The goal is to make user engagement an essential part of healthcare professional training and a crucial criterion for training quality and funding.
Clearly, the issue is to make interventions evolve from users merely expressing their individual experiences to users positioned as full-fledged trainers, defining educational objectives and contributing knowledge that differs from that of professionals. Reported experiences showcased alternative pedagogical modalities which support user participation. This new way of intervening bolsters action from users on issues of care and patient support that extend far beyond the defence of rights.
Within the broader scope of health sciences and social work, continuing education currently benefits the most from patient involvement. As of 2018, initiatives have multiplied with three patient universities opened in recent years (Paris, Aix, Marseille and Grenoble) and two more about to be launched (Lyon, Toulouse). Among more heterogeneous practices, some TEP training programmes train professionals (health, psychosocial), patients and relatives (as caregivers) together. In addition to patient universities, academic courses have also been created, which are open to patients, relatives and user association members, similar to training courses in the field of addictions where users are trained alongside health and psychosocial professionals (Paris XI).
Another initiative, created and launched a few years ago by a citizens group, pushes the concept even further. It organizes civic education events in the form of ethical debates combining art (cinema at first) and current major health issues, which resulted in ethical questioning beyond closed circles of medical students. The Faculty of Medicine of Nice Sophia Antipolis currently grants “credits” when students participate in public debates. In 2018, a university degree (UD) on the Art of Care, which comprises seminars on Narrative Medicine, was offered to medical students, practicing health science professionals, patients and relatives. Different modules are grouped under the same concept of “Care UniverCity” (UniverCité du Soin) (Benattar and Flora 2018).
User Involvement for Research Purposes
Regarding research, several examples illustrate the essential role of users as key interlocutors with researchers. For example, since the end of the twentieth century, members of a group originally composed of five HIV/AIDS community organizations—referred to as TRT-5 (Therapeutic Research and Treatment 5 [Traitement Recherche Thérapeutique 5])—have been involved in all research commissions, in addition to being featured in the organizational chart of the National Research Agency on AIDS and Hepatitis. This agency is the world’s third largest producer of HIV research publications.
Another example comes from the telethon of the French Association of Myopathy (Association française de Myopathie [AFM]) whose donations allowed the creation of the association’s own pharmaceutical laboratory to supplement drug offerings against rare diseases. Moreover, the AFM is the initiator of a European community group network, Eurordis, and the Orphanet Internet platform, integrated into the National Institute of Health and Medical Research (Institut National de la Santé et de la Recherche Médicale [INSERM]).
Based on these examples, in early 2003, INSERM set up the Patient Group Think Tank (Groupe de Réflexion Avec les Associations de Malades [GRAM]), a name chosen with patient groups. The idea was to create collaborations between patient groups and researchers and to be cognizant of each party’s expectations while trying to identify common expectations. As a reflection of that, the GRAM is currently managed by a collective of ten user representatives from approved community organizations, five researchers and five administrators. However, a recent study indicated that researchers still show reluctance towards this type of collaboration, highlighting antagonism between patient groups, their subjectivity and the expected objectivity of science. Although researchers with actual collaboration experience generally tend to be supportive of the think tank …
While the experiential knowledge of patients and users has become a social fact (Durkheim 1894) internationally (Flora 2012; Jouet 2013, 2014; Flora et al. 2014), their recognition in France still remains a work in progress. As presented through this chapter, the voice of users was brought to the fore at a regulatory level via a 2002 framework law and then a general law on TEP in 2009. Additionally, this chapter described the process by which multiple experiences mobilized various forms of experiential knowledge from users/patients. This mobilization led to forms of co-construction and even partnerships.
That said, the challenge now lies in the health system’s capacity to allow widespread use of such knowledge in partnership settings (Duflo 2009, 2010; Suàrez-Herrera 2010) with stable elements which guarantee homogeneity and quality and flexibility which enables ownership. Drawing lessons from collective partnership experiences would help federate all the actors gradually (i.e. health professionals and users) and support progress for the benefit of all.
The process for mobilizing the voice and knowledge of patients–users would be a major contribution to the health system’s restructuring (or that of the French social model in general) especially to grasp its complexity (Morin 1977; Mintzberg 1982). Indeed, our societies and health systems must face several deep transformations: epidemiologically, due to the explosion of patients living with at least one chronic disease (Borges Da Silva 2015; Grimaldi et al. 2017); generationally, with ageing populations; organizationally, with the redistribution of power relations (Ghadiri et al. 2017); and finally, the 4th industrial revolution driven by the world going digital (Schwab 2017). The mobilization of patient voices and knowledge and their translation into applicable knowledge for co-construction, collaboration and partnership will contribute to the management of these transformations. Also, their knowledge will enable us to break new grounds in the process of patient–user appreciation, consideration and engagement.
However, the emergence of this new modality of collaboration between users and professionals should not rule out what was the strength of the French model, namely, the structured representation of user representatives. The risk would be to substitute one by another while the challenge is to jointly strengthen the action of some by that of others.
If we look at the evolution of user representatives, we can be surprised at the shift in their position as bearers of a direct democracy towards representative democracy. Their establishment in 1996, and their reinforcement in 2002, was part of the process of challenging representative democracy and aimed at strengthening mechanisms of direct democracy. Twenty years later, the action of user representatives is questioned, as embodying a form of representative democracy that is heavily questioned today far beyond the health system. The inability of the directorates to have facilitated access to the users of the establishment, the necessary and often fecund alliance with the quality management led to situate them on the side of the technocratic and managerial logic, away from the nursing logic who touches the users much more directly.
The articulation with these new forms of participation is then an opportunity to achieve a mature system of user engagement in the health system: users with patient support functions, peer support, collaboration with health professionals as close as possible to the care that coordinates their actions with those of the users registered in the governance of the institutions and the health system. The latter will guarantee the exercise of the former, who in return will help legitimize the representatives of the users by providing them with the field material, namely, the daily experience of the patients. In addition, the gradual commitment of users in actions closer to the realization of care will lead some to engage in representation actions, thus broadening the base of user representatives and renewing their action methods.
It is on this condition and because the users will then be located at all levels of the system that the expected cultural revolution can be made … it has besides begun.
The authors would like to thank the members of the HAS-FORAP group on wellness and the members of the “users-professionals” group of CAPPS Bretagne.
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