IDEAS home Printed from https://ideas.repec.org/a/eee/hepoli/v123y2019i1p109-114.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0168851018306572
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.healthpol.2018.11.011?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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)

    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. Kleinhout-Vliek, Tineke & de Bont, Antoinette & Boer, Bert, 2017. "The bare necessities? A realist review of necessity argumentations used in health care coverage decisions," Health Policy, Elsevier, vol. 121(7), pages 731-744.
    2. Katarina Baudin & Maria Mullersdorf & Angelina Sundstrom & Christine Gustafsson, 2020. "The Policies of Provision of Assistive and Welfare Technology—A Literature Review," Societies, MDPI, vol. 10(1), pages 1-16, February.
    3. Nicod, Elena & Annemans, Lieven & Bucsics, Anna & Lee, Anne & Upadhyaya, Sheela & Facey, Karen, 2019. "HTA programme response to the challenges of dealing with orphan medicinal products: Process evaluation in selected European countries," Health Policy, Elsevier, vol. 123(2), pages 140-151.
    4. Petra Guasti & Brigitte Geissel, 2019. "Rethinking Representation: Representative Claims in Global Perspective," Politics and Governance, Cogitatio Press, vol. 7(3), pages 93-97.
    5. Petra Guasti & Brigitte Geissel, 2019. "Saward’s Concept of the Representative Claim Revisited: An Empirical Perspective," Politics and Governance, Cogitatio Press, vol. 7(3), pages 98-111.
    6. Tania Stafinski & Jacqueline Street & Andrea Young & Devidas Menon, 2022. "Moving beyond the Court of Public Opinion: A Citizens’ Jury Exploring the Public’s Values around Funding Decisions for Ultra-Orphan Drugs," IJERPH, MDPI, vol. 20(1), pages 1-13, December.
    7. Viola Joschko & Luis Glaser, 2019. "A New Approach to Map and Quantify Representative Claims and Measure Their Validation: A Case Study Analysis," Politics and Governance, Cogitatio Press, vol. 7(3), pages 137-151.
    8. Douglas, Conor M.W. & Panagiotoglou, Dimitra & Dragojlovic, Nick & Lynd, Larry, 2021. "Methodology for constructing scenarios for health policy research: The case of coverage decision-making for drugs for rare diseases in Canada," Technological Forecasting and Social Change, Elsevier, vol. 171(C).
    9. Belousova, Olga A. & Groen, Aard J. & Ouendag, Aniek M., 2020. "Opportunities and barriers for innovation and entrepreneurship in orphan drug development," Technological Forecasting and Social Change, Elsevier, vol. 161(C).
    10. Jun Suzurikawa & Yuki Sawada & Miwa Sakiyama & Motoi Suwa & Takenobu Inoue & Tomoko Kondo, 2021. "Perspectives of Multidisciplinary Professional Teams during Assessment Processes for ATD Selection in the Japanese Public Provision System," IJERPH, MDPI, vol. 18(5), pages 1-16, March.
    11. Alina Pishnyak & Aleksandra Goriainova & Elena Tochilina, 2017. "The Determinants of the Development of the Russian Assistive Technologies Market in the Context of the Interaction of Various Groups of Agents," HSE Working papers WP BRP 12/PSP/2017, National Research University Higher School of Economics.
    12. Juyeon Oh & Jung A Kim, 2017. "Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(23-24), pages 4129-4152, December.
    13. 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.
    14. Marialuisa Saviano & Sergio Barile & Francesco Caputo & Mattia Lettieri & Stefania Zanda, 2019. "From Rare to Neglected Diseases: A Sustainable and Inclusive Healthcare Perspective for Reframing the Orphan Drugs Issue," Sustainability, MDPI, vol. 11(5), pages 1-21, March.

    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:eee:hepoli:v:123:y:2019:i:1:p:109-114. 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: Catherine Liu or the person in charge (email available below). General contact details of provider: http://www.elsevier.com/locate/healthpol .

    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.