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Self-help organisations as patient representatives in health care and policy decision-making

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  • Rojatz, Daniela
  • Forster, Rudolf

Abstract

A crucial question about participation is who is legitimised, willing and capable of representing particular collectives. Social insurance health care systems tend to focus on representation by patient organisations. Self-help organisations (SHOs), as one type of ‘health consumer and patient organisation’, often take over this role. Research findings indicate that participation by SHOs is accompanied by high expectations, but also by concerns about the risks of instrumental abuse, overload and professionalisation. However, there is a dearth of in-depth knowledge about both potential and risks of participating for the SHO.

Suggested Citation

  • 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.
    • Handle: RePEc:eee:hepoli:v:121:y:2017:i:10:p:1047-1052
    DOI: 10.1016/j.healthpol.2017.08.012
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    References listed on IDEAS

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    1. Caron-Flinterman, J. Francisca & Broerse, Jacqueline E.W. & Bunders, Joske F.G., 2005. "The experiential knowledge of patients: a new resource for biomedical research?," Social Science & Medicine, Elsevier, vol. 60(11), pages 2575-2584, June.
    2. Tenbensel, Tim, 2010. "Virtual special issue introduction: Public participation in health policy in high income countries - A review of why, who, what, which, and where?," Social Science & Medicine, Elsevier, vol. 71(9), pages 1537-1540, November.
    3. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
    4. 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.
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    Cited by:

    1. Steven Sek-yum Ngai & Shan Jiang & Chau-kiu Cheung & Hon-yin Tang & Hiu-lam Ngai & Yuen-hang Ng, 2021. "Measuring Development of Self-Help Organizations for Patients with Chronic Health Conditions in Hong Kong: Development and Validation of the Self-Help Organization Development Scale (SHODS)," IJERPH, MDPI, vol. 18(3), pages 1-14, February.
    2. Fischer, Julia & Van de Bovenkamp, Hester M., 2019. "The challenge of democratic patient representation: Understanding the representation work of patient organizations through methodological triangulation," Health Policy, Elsevier, vol. 123(1), pages 109-114.

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