Les associations de malades et la recherche : I. Des self-help groups aux associations de malades.

Abstract

Les associations de malades jouent un rôle de plus en plus important dans le soutien à la recherche. Au-delà du rôle classique de tiers-payant, certaines d’entre elles interviennent dans l’orientation des recherches et contribuent à la production de connaissances sur leurs maladies. Pour comprendre cette implication des associations de malades dans des activités habituellement réservées aux spécialistes, il faut la replacer dans l’histoire plus large du mouvement self-help. Les associations de malades ont en effet hérité d’une revendication essentielle des self-help groups, celle de l’importance de l’expérience des usagers dans la compréhension de leur situation et dans la recherche de solutions aux problèmes qu’ils rencontrent. Cet article vise à restituer les grandes lignes de ce mouvement et quelques-unes de ses ramifications qui expliquent à la fois sa pérennité, la diversité de ses expressions et la permanence d’une des questions qu’il pose, celle de l’organisation des rapports entre les professionnels et les usagers, question qui est au cœur de l’action des associations de malades et qui éclaire le sens de leur engagement dans la recherche.

Patients'associations increasingly support research on diseases they are concerned with. Apart from contributing to the funding of scientific and clinical research, some of them actively participate into the orientation of research and the production of knowledge. This article proposes to provide a few historical milestones for understanding the reasons for their engagement in research, and the stakes involved in that engagement. We first show that patients' associations are players in the broader history of the self-help movement. The self-help movement has helped to reveal and legitimize three claims enabling us to understand patients' associations' interest in 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 their 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 this threefold claims, the self-help movement develops along two directions. The first direction is characterized by a clear distribution of work between specialists on the one hand, and the potential addressees of professional expertise on the other hand. Specialists, because of their professional competencies, decide on the most relevant care for their patients, whereas patients' associations provide social and emotional support. The second direction asserts the idea that patients are the best specialists on their own disease, and that they construct their own identity and secure its recognition by involving themselves in their treatment. The increasing involvement of patients' associations into the research realm is the culmination of the latter tendency, that has helped to reshape relations between specialists and lay people.