IExactly a year ago, the twentieth anniversary of the Kouchner law of March 4, 2002 on patients’ rights was an opportunity to take stock of this founding public health text. This has shown that while the individual rights of patients have undeniably progressed, the game is still far from won when it comes to collective rights and health democracy. In a small book just published by Erès editions, Patients in action, health democracy in question, the lawyer by training, Lucile Sergent, deepens this fascinating subject of the participation of citizens and patients in the health system. This doctoral student in sociology, also a patient expert, sets the record straight, starting with that of history.
For many, the collective movements of patients began above all with the AIDS epidemic, in the 1980s. Lucile Sergent, however, unearths much older roots, from the end of the 19e century. While tuberculosis was the greatest cause of death – antibiotics had not yet been discovered – the patients were active and gathered in associations from 1892.
A few decades later, “close to the Communist Party, the FNLA [Fédération nationale de lutte antituberculeuse] will lead many fights for the well-being of the sick, even organizing strikes in the sanatoriums”, writes the sociologist, detailing the many actions of associations of tuberculosis patients, but also the mobilization, after the First World War, of other collectives such as those of people with disabilities.
A role of counter-power
Closer to home, the author highlights the work of associations such as Renaloo (kidney patients) or Ciane (Interassociative collective around birth), which build and publish studies and knowledge through the implementation of A evidence-based activism (“evidence-based activism”). With its own work on episiotomy and onset of childbirth, Ciane has thus proven the negative consequences of their misuse. “By using the expert’s own tools, associations are shaking up dogmas and undermining practices that are no longer questioned”notes the sociologist.
Patient groups have gained scientific legitimacy and play a counter-power role. But, beware of the risks of instrumentalization, warns Lucile Sergent. “If today public policies as well as the program of the drug industry seem to advocate health democracy, the study of their documentation shows that it is sometimes misguided in favor of managerial objectives”, she analyzes, with supporting examples.
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