The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation

Abstract

The past few decades have witnessed the increasingly active participation of patient organisations in research activities concerning them. They contribute substantially to the funding of scientific and clinical research. More importantly, certain patient organisations take strategic decisions concerning that research, and contribute to the production of knowledge on their diseases. In France, the AFM (Association Française contre les Myopathies-French Muscular Dystrophy Organisation), is a striking illustration. The paper argues that the model of the AFM's engagement in research-the "partnership model"-is original insofar as it renews the power relations between patients and professionals found in two classic models: the "auxiliary model" and the "emancipatory model". Based on a long-term study of the French Muscular Dystrophy Organisation, this "partnership model" is characterised and its implications discussed in three respects: the possible generalisation of the mode of relations it establishes between patients and professionals; its effects on the steering of research; and its consequences for the dynamics of patient organisations movements.