Patients' associations and research. II. Modalities of patients' associations involvement into research activities in France

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 in its orientation, and i n the production and the dissemination of knowledge. The aim of this articl e, based mostly on the French case, is to present data on the scope of this support, and to provide some insights into the various modalities of patie nts' associations involvement into research activities. The authors first s how that the role and the influence of patients' associations are related t o the strategies developed by existing organizations, be they public or pri vate, but also to the nature of the diseases they are fighting against. The n, they present figures providing evidence of the crucial role of associati ons in the support to certain fields of research. Finally, they propose to distinguish between two types of associations. This distinction is based on the nature of the relationships associations establish with the profession als, and of the role they play in the coproduction of knowledge. In conclus ion, the authors suggest that through their involvement into research, some associations might contribute to the emergence of a new model for linking science users and science producers. This model might prove to be relevant in the future for other sectors, like environment.