The entanglement of scientific and political claims: towards a new form of patients' activism
type: Dataset
description: 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.
landing page: https://minesparis-psl.hal.science/hal-00913925
keyword: adhd
keyword: alzheimer
keyword: childbirth
keyword: evidence-based-activism
keyword: health-activism
keyword: healthcare-policy
keyword: infoeu-reposemanticspreprint
keyword: patients-organizations
keyword: preprints-working-papers-
keyword: rare-diseases
keyword: shssociohumanities-and-social-sciencessociology
issued: 2026-05-07T23:09:09.995325
modified: 2026-05-07T23:09:09.995330
language: en
contact point: Organization
  fn: CCSD

test_moissonnage_selune
type: Agent

The entanglement of scientific and political claims: towards a new form of patients' activism
type: Distribution
format: HTML
access URL: https://minesparis-psl.hal.science/hal-00913925
issued: 2026-05-07T23:09:10.000463
modified: 2026-05-07T23:09:09.982358