twenty years of an unfinished revolution

Twenty years later, to the day, they all met at the Ministry of Health to celebrate the anniversary of the law of March 4, 2002 on the rights of patients. Festivities in the form of a symposium organized by the Law and Health Institute (Inserm, University of Paris). There was Bernard Kouchner, former Minister of Health who left his name to this law; Didier Tabuteau, his director of cabinet at the time, who played a major role throughout the process; other “Kouchner boys”; and many of the protagonists of this legislative epic. They were all smiling. Olivier Véran, the current tenant of avenue de Ségur, greeted “a very beautiful law”.

Conferences, but also surveys of the general population, of patients, of health professionals… The twentieth anniversary of this great public health law is an opportunity to take stock of the progress it has enabled, but also to take the measure of the path that remains to be traveled in terms of patients’ rights and health democracy. The Covid pandemic has also revealed how fragile achievements can be.

After a long gestation, under the leadership of Didier Tabuteau, now Vice-President of the Council of State, in the particular context of the HIV/AIDS epidemic and the contaminated blood affair, the Kouchner law is promulgated in 2002. It then sounded like a revolution. For the first time, patients are recognized as persons in their own right. The text is also, another new element, the result of broad and long consultations with associations and all stakeholders.

“We discovered the patient, it is the most beautiful discovery of the XXIand century, ahead of genome sequencing! »smiles Gérard Raymond, actor of the first hour of the process, today president of France Assos Santé (FAS), which brings together 83 patient associations.

Improve the relationship between patient and doctor

Among the key measures, direct access to medical records, patient information, seeking their consent to care, the possibility of designating a trusted person, the establishment of a compensation system for therapeutic hazards (event without fault for caregivers) with the creation of the National Office for Compensation for Medical Accidents and Nosocomial Infections (Oniam), etc.

The common thread is the improvement of the relationship between patient and doctor, thus putting an end to medical paternalism, and to the “passivity” of the patient, who becomes an actor in his health. In addition to individual rights, there is the recognition of collective rights, with the representation of users within health authorities (hospitals, health agencies, etc.), thus opening the way to health democracy. Never questioned in its principles, the law of March 4, 2002 has on the contrary been enriched since by other legislative texts, which authorized group actions in justice, specified rights for the end of life…

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