[Production of knowledge using data collected by associations of patients: The fibromyalgia example]

To respond to the social challenge of medical knowledge democratisation, numerous initiatives have been developed: information, training or consultation of patients or research applications funded by associations of patients. Only a few numbers of collaborations are initiated by the persons directly involved (patients and relatives) or fulfill association research need. We have adopted and tested such an approach with the French fibromyalgia association (Fibromyalgie France). Our work demonstrates the interest to use data collected by associations of patients to answer to their questioning or to rise further relevant research questions. Such participative approach will have a pertinent and significant impact on the knowledge of diseases and on the development of collaborative actions of research, providing a better answer to patient needs, while being methodologically rigorous.