“User engagement and participation must be reaffirmed in all its dimensions. » This recommendation from the High Authority for Health, published in December 2023, painfully shows that twenty years after the promulgation of the Law on Democracy in Health Care, not enough has changed.

Patients who are primarily affected by care are left out: doctors are woefully short of time, hospital administrative structures are crumbling under cumbersome, legally mandated procedures, and associations do not recognize each other. France Assos Santé was committed to representing patients in our healthcare system and coordinating the actions of associations that serve the common good. Unfortunately, it is still the case that associative structures are still poorly integrated into medical processes and bodies.

Their legitimacy remains controversial, their notoriety is still lacking; This is even more true for small associations representing patients suffering from rare or little-known diseases, which have insufficient space in hospital organizations due to lack of authorization or insufficient resources (time, financing). However, it must be remembered that many of these small associations, which do remarkable work every day in terms of information, awareness, listening and support for patients and their carers, only function thanks to the commitment of their volunteers.

Health authorities

The dialogue anchored in the law is just as important for improving treatment compliance and patient well-being as it is for improving the quality of care, the quality of life at work for nurses and even for enriching medical knowledge through feedback.

In a bloodless healthcare system where working conditions for nurses have become difficult, limiting the expression of patients’ voices to specific pathologies, due to lack of time and resources, risks delaying progress. medical conditions and deteriorate the quality of care. It is urgent to finally create a framework that favors the expression of opinions of patients from small association structures and unrepresented patients, and to give them the means and knowledge necessary to dialogue with health authorities in hospitals and in community medicine. City.

These two goals first require that we – health authorities, patients, carers and health professionals – reflect together on clarifying the different roles of patients, taking inspiration from the Montreal model and recognizing their status.

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