The entanglement of scientific and political claims. Towards a new form of patients' activism

Madeleine Akrich (1) , Orla O'Donovan (2) , Vololona Rabeharisoa (1)

1 CSI i3 - Centre de Sociologie de l'Innovation i3
2 Department of Applied Social Studies

Drawing on fieldwork in four condition areas (rare diseases, childbirth, Attention Deficit Hyperactivity Disorder, and Alzheimer’s disease), this article shows that patients’ organizations’ (POs) engagement with knowledge is neither limited to a set of diseases nor restricted to biomedical knowledge. Their work on and with academic and experiential knowledge contributes to an understanding of their conditions and the problems they induce, and to the shaping of the causes they defend. This results in the production of new evidence for grounding research and health policies in their condition areas. The authors propose the notion of “evidence-­‐based activism” to capture the centrality of knowledge activities in contemporary POs.

Mots clés: Patients’ organizations - health activism - evidence-­‐based activism - healthcare policy - ADHD - Alzheimer - rare diseases - childbirth

Domaines: Sociologie

Madeleine Akrich, Orla O'Donovan, Vololona Rabeharisoa. The entanglement of scientific and political claims. Towards a new form of patients' activism. Peter Wehling, Willy Viehöver and Sophia Koenen. The Public Shaping of medical Research. Patient associations, health movements and biomedicine., Routledge, pp.72-88, 2015. ⟨hal-01111466⟩