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


  • Vololona Rabeharisoa

    (Centre de Sociologie de l'Innovation, Mines ParisTech)


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 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.

Suggested Citation

  • Vololona Rabeharisoa, 2013. "Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society," CSI Working Papers Series 033, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
  • Handle: RePEc:emn:wpaper:033

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    References listed on IDEAS

    1. Landzelius, Kyra, 2006. "Introduction: Patient organization movements and new metamorphoses in patienthood," Social Science & Medicine, Elsevier, vol. 62(3), pages 529-537, February.
    2. Haas, Peter M., 1992. "Introduction: epistemic communities and international policy coordination," International Organization, Cambridge University Press, vol. 46(01), pages 1-35, December.
    3. Barker, Kristin K., 2011. "Listening to Lyrica: contested illnesses and pharmaceutical determinism," Social Science & Medicine, Elsevier, vol. 73(6), pages 833-842, September.
    4. Rabeharisoa, Vololona, 2006. "From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 564-576, February.
    5. Cambrosio, Alberto & Keating, Peter & Schlich, Thomas & Weisz, George, 2006. "Regulatory objectivity and the generation and management of evidence in medicine," Social Science & Medicine, Elsevier, vol. 63(1), pages 189-199, July.
    6. Philippe Robert-Demontrond & R. Ringoot, 2004. "Introduction," Post-Print halshs-00081823, HAL.
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    More about this item


    evidence-based activism; patients’ and health activists’ groups; expertise; healthcare policies; collective inquiry; technological democracies;

    JEL classification:

    • I18 - Health, Education, and Welfare - - Health - - - Government Policy; Regulation; Public Health
    • Z18 - Other Special Topics - - Cultural Economics - - - Public Policy

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