EXPAIRs – ISTR UNIVERSITE LYON 1 PARTNERSHIP
WHAT CAN PATIENTS BRING TO
HEALTH PROFESSIONALS AND THEIR PEERS?
Online Study Day, January 28, 2021
PROGRAM
ROUND TABLE: AN INFORMAL CONVERSATION BETWEEN PATIENTS, AND KEY LEARNINGS
- Peer support: a useful tool for health professionals
Sabine Lionnard-Rety, Occupational Therapist, Institute of Rehabilitation Sciences and Techniques, Université Claude Bernard Lyon 1 - Patients’ use of physical activity in cardiac rehabilitation
Julien Cazal, Associate Professor, VIPS2, Rennes 2 University
ROUND TABLE: PATIENT INPUT TO HEALTHCARE
- ADEPA: a wide range of practices and issues for peer amputees and professionals
Paul-Fabien Groud, Post-doctoral fellow, S2HEP, Université Claude Bernard Lyon 1
Anne Marsick, association for the defense and study of amputees member - The patient-expert: witness, facilitator and intermediary
Jean-Luc Blaise, Patient-expert in a Therapeutic Patient Education program and Heart Health club coordinator
ROUND TABLE: PATIENT EXPERIENTIAL KNOWLEDGE AND ITS EFFECTS
- What I learnt from my peers
Dominique Gutiez, Patient - Patients’ experiential knowledge: what is it all about?
Eve Gardien, Associate Professor, ESO, CNRS, Rennes 2 University
RATIONALE
Patients are often thought of as healthcare consumers, but they not just that, nor are they simply patients receiving care: they play a vital role in healthcare. Since the 2000s in France, public policy recommendations (2002 Law, HPST* Law, and the Health Law), and the activities of various institutional actors (including the French National Authority for Health – HAS), committed professionals, and patient associations, have promoted and facilitated patient involvement.
As part of the urge towards democratic healthcare, the Law of March 4, 2002 introduced new patient roles and responsibilities. This law encourages patients to become involved in two ways: on an individual level, patients have the right to comprehensive, quality information about their state of health, and to be able to use their right to consent to/or refuse a medical examination or treatment, in an informed manner; and on a collective level, the 2002 Law created user representative status. The latter is a member of an approved patient association and is commissioned, in this context, to bring a cross-disciplinary perspective – developed collectively by patients – to various bodies in the health sector or throughout France. The user representative can also observe, collect information about practices and working methods, mediate, contribute to drawing up health policies, prevent undesirable events, and fight for patients’ rights effectivity.
The scope for action legislated for patients within the healthcare system is therefore vast. Consultative, informative and co-development bodies are multiplying and include: Users’ Committee (CDU); Supervisory Board (CS); Institutional Medical Committee (CME); Institutional Technical Committee (CTE); Sustainable Development Committee; Ethics Committee; Nosocomial Infection Control Committee (CLIN); Medicines and Medical Devices Committee (CMDMS); Local Health Councils (CLS); Local Mental Health Councils (CLSM); User Centers, Regional Health and Autonomy Conferences (CRSA); Town and City Health Workshops; Regional Health Contracts; Regional Health Projects; and Regional Mental Health Projects, etc. This list is far from complete.
Other types of patient involvement are also developing: patient-experts take part in Patient Therapeutic Education (HPST Law); “patient-resources” support various schemes through their contributions and help to create and implement them; patient-partners become involved when professionals or institutions ask them to; peer supporters or peer health mediators support other people going through mental health problems and share their experiential knowledge; patient teachers or patient trainers take part in teaching content in medical universities, nursing training institutes (IFSI), and paramedical training courses, etc. It is also important to mention the recent development of collective participation in care within physical medicine and rehabilitation establishments and services, at the initiative of carers and with a strong emphasis on informal support between patients.
Patient involvement in the healthcare system is therefore not a marginal but a real trend (Bousquet, Ghadi, 2017; Routelous, 2008). New Ma santé 2022 (My Health 2022) certification modes for healthcare establishments, and French National Health Authority (HAS) guidelines for user involvement in the healthcare, social and medico-social sectors, are likely to have a profound impact on the French healthcare system.
The aim of this Study Day is to analyze concrete situations and understand the challenges of these new practices, their impact, advantages, and disadvantages. This day will focus particularly, but not solely, on formal and informal patient activities in relation to other patients within the healthcare context and managing an illness daily.