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From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet

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  • Madeleine Akrich

Abstract

This paper describes the emergence of new activist groups in the health sector, spinning off from internet discussion groups. In the first part, it shows how self-help discussion groups can be considered as communities of practice in which, partly thanks to the Internet media, collective learning activities result in the constitution of experiencial knowledge, the appropriation of exogenous sources of knowledge, including medical knoweldge and the articulation of these different sources of knowledge in some lay expertise. In the second part, it describes how activist groups might emerge from these discussion groups and develop specific modes of action drawing upon the forms of expertise constituted through the Internet groups. Activists groups together with self-help groups might form epistemic communities ( HAAS 1992 ), i.e. groups of experts engaged in a policy enterprise in which knowledge plays a major role : in the confrontation of health activists with professionals, the capacity to translate political claims into the langage of science appears as a condition to be (even) heard and be taken into consideration.

Suggested Citation

  • Madeleine Akrich, 2010. "From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet," Sociological Research Online, , vol. 15(2), pages 116-132, May.
  • Handle: RePEc:sae:socres:v:15:y:2010:i:2:p:116-132
    DOI: 10.5153/sro.2152
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    References listed on IDEAS

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    Cited by:

    1. Madeleine Akrich & Maire Leane & Celia Roberts & João Arriscado Nunes, 2012. "Practising childbirth activism: a politics of evidence," CSI Working Papers Series 023, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    2. Alexandre Hannud Abdo & Jean‐Philippe Cointet & Pascale Bourret & Alberto Cambrosio, 2022. "Domain‐topic models with chained dimensions: Charting an emergent domain of a major oncology conference," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 73(7), pages 992-1011, July.
    3. Madeleine Akrich & Orla O'Donovan & Vololona Rabeharisoa, 2013. "The entanglement of scientific and political claims:towards a new form of patients’ activism," CSI Working Papers Series 035, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    4. Almudena Alameda Cuesta & à lvaro Pazos Garciandía & Cristina Oter Quintana & Marta Elena Losa Iglesias, 2021. "Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences," Clinical Nursing Research, , vol. 30(1), pages 32-41, January.
    5. 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.
    6. 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.
    7. Campbell, Patricia A., 2021. "Lay participation with medical expertise in online self-care practices: Social knowledge (co)production in the Running Mania injury forum," Social Science & Medicine, Elsevier, vol. 277(C).
    8. Kuchinskaya, Olga & Parker, Lisa S., 2018. "‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss," Social Science & Medicine, Elsevier, vol. 216(C), pages 74-80.
    9. Schneid, Iris & Raz, Aviad E., 2020. "The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults," Social Science & Medicine, Elsevier, vol. 248(C).
    10. Lhoste, Evelyne F., 2020. "Can do-it-yourself laboratories open up the science, technology, and innovation research system to civil society?," Technological Forecasting and Social Change, Elsevier, vol. 161(C).
    11. Rojatz, Daniela & Forster, Rudolf, 2017. "Self-help organisations as patient representatives in health care and policy decision-making," Health Policy, Elsevier, vol. 121(10), pages 1047-1052.

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