The entanglement of scientific and political claims: towards a new form of patients' activism

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.

Data and Resources

Additional Info

Field Value
Source https://minesparis-psl.hal.science/hal-00913925
Author Akrich, Madeleine, O'Donovan, Orla, Rabeharisoa, Vololona
Maintainer CCSD
Last Updated May 7, 2026, 23:09 (UTC)
Created May 7, 2026, 23:09 (UTC)
Identifier hal-00913925
Language en
Rights https://about.hal.science/hal-authorisation-v1/
contributor Centre de Sociologie de l'Innovation i3 (CSI i3) ; Mines Paris - PSL (École nationale supérieure des mines de Paris) ; Université Paris Sciences et Lettres (PSL)-Université Paris Sciences et Lettres (PSL)-Institut interdisciplinaire de l’innovation (I3) ; Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS)
creator Akrich, Madeleine
date 2013-12-04T00:00:00
harvest_object_id 4697484d-5872-4d38-8e9b-85439b5824b6
harvest_source_id 3374d638-d20b-4672-ba96-a23232d55657
harvest_source_title test moissonnage SELUNE
metadata_modified 2026-01-12T00:00:00
set_spec type:UNDEFINED