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The challenge of democratic patient representation: Understanding the representation work of patient organizations through methodological triangulation

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  • Fischer, Julia
  • Van de Bovenkamp, Hester M.

Abstract

Increasingly, patient organizations (POs) play a role in health policy making. Their involvement is expected to contribute to the democratization of decision making. It is therefore important to study this contribution. Scholars hardly draw on representation theory for this. Yet exploring POs as a case of representation is crucial to better understand how POs add to democratizing health policy.

Suggested Citation

  • 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.
    • Handle: RePEc:eee:hepoli:v:123:y:2019:i:1:p:109-114
    DOI: 10.1016/j.healthpol.2018.11.011
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    References listed on IDEAS

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    1. Kamphuis, Helen & Hekkert, Karin & van Dongen, Marie-Christine & Kool, Tijn, 2012. "Facts and figures about patient associations in the Netherlands between 2007 and 2009: Review of their activities and aims," Health Policy, Elsevier, vol. 107(2), pages 243-248.
    2. Henschke, Cornelia, 2012. "Provision and financing of assistive technology devices in Germany: A bureaucratic odyssey? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy," Health Policy, Elsevier, vol. 105(2), pages 176-184.
    3. 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.
    4. Douglas, Conor M.W. & Wilcox, Elizabeth & Burgess, Michael & Lynd, Larry D., 2015. "Why orphan drug coverage reimbursement decision-making needs patient and public involvement," Health Policy, Elsevier, vol. 119(5), pages 588-596.
    5. Kuyper, Jonathan W., 2016. "Systemic Representation: Democracy, Deliberation, and Nonelectoral Representatives," American Political Science Review, Cambridge University Press, vol. 110(2), pages 308-324, May.
    Full references (including those not matched with items on IDEAS)

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