IDEAS home Printed from https://ideas.repec.org/p/emn/wpaper/033.html
   My bibliography  Save this paper

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

Author

Listed:
  • Vololona Rabeharisoa

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

Abstract

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
    as

    Download full text from publisher

    File URL: http://www.csi.mines-paristech.fr/working-papers/DLWP.php?wp=WP_CSI_033.pdf
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Barbot, Janine, 2006. "How to build an "active" patient? The work of AIDS associations in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 538-551, February.
    2. Landzelius, Kyra, 2006. "Introduction: Patient organization movements and new metamorphoses in patienthood," Social Science & Medicine, Elsevier, vol. 62(3), pages 529-537, February.
    3. Haas, Peter M., 1992. "Introduction: epistemic communities and international policy coordination," International Organization, Cambridge University Press, vol. 46(1), pages 1-35, January.
    4. Barker, Kristin K., 2011. "Listening to Lyrica: contested illnesses and pharmaceutical determinism," Social Science & Medicine, Elsevier, vol. 73(6), pages 833-842, September.
    5. 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.
    6. 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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Raz, Aviad & Jongsma, Karin R. & Rimon-Zarfaty, Nitzan & Späth, Elisabeth & Bar-Nadav, Bosmat & Vaintropov, Ella & Schicktanz, Silke, 2018. "Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people," Social Science & Medicine, Elsevier, vol. 200(C), pages 65-72.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
    2. Claire Edwards & Etaoine Howlett & Madeleine Akrich & Vololona Rabeharisoa, 2012. "Attention deficit hyperactivity disorder in France and Ireland: parents' groups' scientific and political framing of an unsettled condition," CSI Working Papers Series 024, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    3. Dimond, Rebecca & Bartlett, Andrew & Lewis, Jamie, 2015. "What binds biosociality? The collective effervescence of the parent-led conference," Social Science & Medicine, Elsevier, vol. 126(C), pages 1-8.
    4. Fillion, Emmanuelle, 2008. "Clinical relationships tested by iatrogenicity: The case of haemophiliac patients faced with the epidemic of transfusional AIDS," Social Science & Medicine, Elsevier, vol. 67(9), pages 1400-1409, November.
    5. Claude Paraponaris, 2017. "Plateformes numériques, conception ouverte et emploi," Post-Print halshs-01614430, HAL.
    6. Andrew B. Whitford & Derrick Anderson, 2021. "Governance landscapes for emerging technologies: The case of cryptocurrencies," Regulation & Governance, John Wiley & Sons, vol. 15(4), pages 1053-1070, October.
    7. Barry Eichengreen and Fabio Ghironi., 1997. "European Monetary Unification and International Monetary Cooperation," Center for International and Development Economics Research (CIDER) Working Papers C97-091, University of California at Berkeley.
    8. Jeanie Bukowski, 2017. "A “new water culture†on the Iberian Peninsula? Evaluating epistemic community impact on water resources management policy," Environment and Planning C, , vol. 35(2), pages 239-264, March.
    9. Mateos-Garcia, Juan & Steinmueller, W. Edward, 2008. "The institutions of open source software: Examining the Debian community," Information Economics and Policy, Elsevier, vol. 20(4), pages 333-344, December.
    10. Catherine Long, 2017. "Delegated Service Authority: Institutional Evolution of PEPFAR Health-Based Program Implementing Units in Tanzania," Global Policy, London School of Economics and Political Science, vol. 8(3), pages 303-312, September.
    11. Federico Maria Ferrara & Jörg S Haas & Andrew Peterson & Thomas Sattler, 2022. "Exports vs. Investment: How Public Discourse Shapes Support for External Imbalances," Post-Print hal-02569351, HAL.
    12. Sandberg, Kristin Ingstad & Andresen, Steinar & Bjune, Gunnar, 2010. "A new approach to global health institutions? A case study of new vaccine introduction and the formation of the GAVI Alliance," Social Science & Medicine, Elsevier, vol. 71(7), pages 1349-1356, October.
    13. May-Britt Stumbaum, 2015. "The diffusion of norms in security-related fields: views from China, India and the EU," Asia Europe Journal, Springer, vol. 13(3), pages 331-347, September.
    14. Dimond, Rebecca & Stephens, Neil & Herbrand, Cathy, 2023. "Making patients political: Narrating, curating, enacting, and navigating the ‘idealised policy patient’," Social Science & Medicine, Elsevier, vol. 338(C).
    15. Sosay, Gül & Zenginobuz, Unal, 2005. "Independent regulatory agencies in emerging economies," MPRA Paper 380, University Library of Munich, Germany.
    16. Muriel Figuié & Tristan Fournier, 2010. "Risques sanitaires globaux et politiques nationales : la gestion de la grippe aviaire au Vietnam," Review of Agricultural and Environmental Studies - Revue d'Etudes en Agriculture et Environnement, INRA Department of Economics, vol. 91(3), pages 327-343.
    17. Tanja A. Börzel & Thomas Risse, 2009. "Diffusing (Inter-) Regionalism - The EU as a Model of Regional Integration," KFG Working Papers p0007, Free University Berlin.
    18. Cynthia Couette, 2024. "Epistemic competition in global governance: The case of pharmaceutical patents," Global Policy, London School of Economics and Political Science, vol. 15(3), pages 516-527, June.
    19. Eleanor Fisher & Jeremy D. Holland, 2003. "Social development as knowledge building: research as a sphere of policy influence," Journal of International Development, John Wiley & Sons, Ltd., vol. 15(7), pages 911-924.
    20. Kovacic, Zora & Giampietro, Mario, 2015. "Empty promises or promising futures? The case of smart grids," Energy, Elsevier, vol. 93(P1), pages 67-74.

    More about this item

    Keywords

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

    JEL classification:

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

    NEP fields

    This paper has been announced in the following NEP Reports:

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:emn:wpaper:033. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Florence Paterson (email available below). General contact details of provider: https://edirc.repec.org/data/siempfr.html .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.