Patients' associations and research. I. From self-help groups to patients associations

Patients' associations increasingly support research on diseases they are c oncerned with. Apart from contributing to the funding of scientific and cli nical research, some of them actively participate into the orientation of r esearch and the production of knowledge. This article proposes to provide a few historical milestones for understanding the reasons for their engageme nt in research, and the stakes involved in ir that engagement. We first sho w that patients' associations are players in the broader history of the sel f-help movement. The self-help movement :has helped to reveal and legitimiz e three claims enabling us to understand patients' associations' interest i n research (1) a claim that could be qualified as epistemological, for the experiences that patients talk about between themselves to be considered as knowledge in its own right on their diseases; (2) a political claim for th eir problems to be given particular attention by political and professional authorities; (3) an identity claim for them no longer to be reduced to the simple role of (passive) patients but to be recognized as active partners in debates and practices concerning them. We then show that drawing from th is threefold claims, the self-help movement develops along two directions. The first direction is characterized by a clear distribution of work betwee n specialists on the one hand, and the potential addressees of professional expertise on the other hand. Specialists, because of their professional co mpetencies, decide on the most relevant care for their patients, whereas pa tients' associations provide social and emotional support. The second direc tion asserts the idea that patients are the best specialists on their own d isease, and that they construct their own identity and secure its recogniti on by involving themselves in their treatment. The increasing involvement o f patients' associations into the research realm is the culmination of the latter tendency, that has helped to reshape relations between specialists a nd lay people.