Evidence-based activism: Patients' organisations, users' and activist's groups in knowledge society

This article proposes the notion of 'evidence-based activism' to capture patients' and health activists' groups' focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal, and the UK), and in four condition areas (rare diseases, Alzheimer's disease, ADHD - Attention Deficit Hyperactivity Disorder, and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and 'experiential knowledge' with a view to explore concerned people's situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and a collective level. This article argues that in contrast to health movements which contest institutions from the outside, patients' and activists' groups which embrace 'evidence-based activism' work 'from within' to imagine new epistemic and political appraisal of their causes and conditions. 'Evidence-based activism' entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims. From a conceptual standpoint, 'evidence-based activism' sheds light on the on-going co-production of matters of fact and matters of concern in contemporary technological democracies.

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Source https://minesparis-psl.hal.science/hal-00822864
Author Rabeharisoa, Vololona, Moreira, Tiago, Akrich, Madeleine
Maintainer CCSD
Last Updated May 11, 2026, 03:23 (UTC)
Created May 11, 2026, 03:23 (UTC)
Identifier hal-00822864
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 Rabeharisoa, Vololona
date 2013-05-15T00:00:00
harvest_object_id 6469151d-ea63-42a2-9f60-ad629521de1d
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