EXPEERTs Study day 2021

What can patients give to their peers and to health professionals?

Online conference, January 28, 2021

Patients are often seen as consumers of care, but they are more than that, just as they are not simply patients being cared for. The patient is an essential player in health care. Since the year 2000 in France, directions taken by public policies (Law 2002, HPST Law, Health Law), the activities of various institutional players (including HAS[1]), and dedicated professionals or patient associations have enhanced and facilitated patient involvement.

As part of a call for health democracy, the law of March 4, 2002 established new patient roles and responsibilities. This law promotes a two-fold involvement of the patient. At an individual level, each patient has the right to complete and accurate information on their state of health in order to be able to exercise – in an informed manner – their right to consent to or, on the contrary, to reject a medical examination or treatment. At the collective level, the 2002 law created the status of user representative. The latter is a member of a registered patient association and is mandated within this framework to bring a global perspective, developed collectively by patients at various levels in the health sector or in the region. The user representative can also function as an observer, gather information on practices and process, mediate, participate in defining health policies, prevent undesirable events or advocate for effective patient rights.

There is thus a broad scope of authorized action available to patients within the healthcare system. There are more and more groups devoted to consultation, information and co-construction: Patients’ Commission (CDU), Supervisory Board (CS), Medical Commission on Care Institutions (CME), Institutional Technical Committee (CTE), Sustainable Development Committee , Ethics Committee, Hospital-acquired Infections Control Committee (CLIN), Medicines and Medical Devices Committee (CMDMS), but also Local Health Councils (CLS), Local Mental Health Councils (CLSM), Patients’ Center, Regional Conference on Health and Autonomy (CRSA), City Health Workshops, Regional Health Contracts, Regional Health Project, Regional Mental Health Project, etc. This list is far from exhaustive.

In addition, other types of patient involvement are developing: the “patient-expert” participates in the Therapeutic Education of the Patient (HPST law[2]); “resource patients” supports various courses of action through their contributions, and help in organizing and implementing them; the “patient partner” gets involved following requests by professionals or institutions; the “peer helper” or “peer health mediator” gives support to other people going through mental health challenges and shares their own experiential knowledge; the “patient-teacher” or the “patient trainer” participates in providing content in medical and nursing schools (IFSI), in paramedical training, etc. Not to mention the recent development of participation – at the initiative of caregivers – in care within a collective framework in physical medicine and rehabilitation facilities and services, as well as an emphasis on informal support between patients.

Patient participation in the health system is therefore not a marginal trend but a significant development (Bousquet, Ghadi, 2017; Routelous, 2008). Ma santé 2022, the new certification procedures for health facilities, the HAS recommendations on user involvement in the health, social and medico-social sectors of activity, all these will doubtless profoundly change the French health care system. Through the analysis of concrete situations, the goal of this one-day conference is to understand the challenges of these new practices, their impact, their advantages and disadvantages. This day will focus particularly, but not exclusively, on formal or informal activities of patients in relation to other patients as part of the care and management of daily life with illness.

  1. Poster of the 2021 EXPEERTs study day
  2. Website of the 2021 EXPEERTs study day
  3. The recordings of the 2021 EXPEERTs study day

[1] High Authority of Health

[2] Hospital, Patient, Health, Territory Law

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