Gérard Raymond, speaking up for patients
Fourth post in our series "Inclusive governance: what's the point? Example of user inclusion in the healthcare sector", produced following the eponymous conference organized by YourVoice, on the occasion of the Convergences World Forum.
Diagnosed with type 1 diabetes at the age of 35, Gérard Raymond quickly became involved with the Fédération Française des Diabétiques. He will serve as President from 2015 to 2019 before being elected President of France Assos Santé. He is dedicated to "collective emancipation for individual emancipation" by defending patients' rights.
"I found that there was something essential missing from the life of a person with a chronic pathology: sharing. You're not alone in the face of illness, you have to share it."
"I fell into the voluntary sector as a child and have always been involved in entertainment. In my career as a company director, I managed teams, until I was confronted with the healthcare system for which I was not prepared. I found myself hospitalized for several weeks after discovering my diabetes. I quickly realized that it wasn't just by listening to the doctors that I was going to rebuild my life. I had to understand what my body was telling me. So I started talking to other patients who lived far from the highly medicalized approach of doctors. With them, we talked about our daily quality of life, our married life and our professional life.
Gérard Raymond asserts that the great discovery of the 21st century is the existence of the patient. The 2002 law requires healthcare professionals to engage in dialogue with their patients. This provision was embodied in the creation of user commissions within establishments. Subsequent laws have strengthened user representation, culminating in the 2016 law creating the Union nationale des associations agréées du système de santé, renamed France Assos Santé.
"When you know how to share and listen, when you have a real project, the associative sector becomes a melting pot of initiatives, new management methods and new ways of active participation.
"For me, associations, particularly so-called "patient" associations, are the ideal place for sharing and providing/favoring mutual support. That's why, within the AFD, which has now become a federation, we set up patient training courses (expert patients) to support other patients as part of a program financed mainly by the French health insurance scheme "Elan solidaire". It was a revolution in diabetology, and some people thought our approach would kill people. Today, we are building therapeutic education and support programs together, and some of our patients are even involved in the initial training of healthcare professionals. To assume its role as a health player, AFD has had to transform itself to become a more modern association and better respond to the needs of a growing population of diabetic patients. A review of the association's governance was carried out to ensure better collaboration between the elected members of the Board of Directors and the salaried team (creation of binomials and then circles of expertise).
Many associations have a vertical system of governance, with a chairman who sometimes has a double vote, then an executive committee and a board of directors who validate the decisions taken. We have tried to initiate actions to encourage the commitment of active volunteers and militants, in co-construction with employees. We have come closer to the holacracy system, which draws on the expertise and experience of each individual. This shared governance requires methods of leadership and participation based on respect and consent. This mode of operation is now one of AFD's mainstays. It is undoubtedly a source of new initiatives.
Today, France Assos Santé brings together more than 100 accredited patient associations. The union is consulted on all legislation concerning the healthcare system. While the participation of users has become an integral part of the healthcare system, they must now be fully involved in the transformations to come.
"We hear that the voluntary sector lacks volunteers and commitment. Perhaps we should listen to what society wants, and develop new training opportunities, new forms of commitment and new ways of operating for associations."
"In the associative sector, particularly in healthcare, it's hard to call oneself into question, whereas questioning one's raison d'être and the way one operates makes one more attentive and attractive. At France Assos Santé, we want to transform ourselves to better meet the demands of society and the new needs of the communities we represent.
In associations, there are three main issues: how to set up an associative project, how to deal with a more horizontal and participative way of operating, and how to listen to the entire community represented. Association managers need to train themselves and adopt a more reflective stance on their management methods.
