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Moving from Patient Advocacy to Partnership: A Long and Bumpy Road

Author

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  • Durhane Wong-Rieger

    (Canadian Organization for Rare Disorders
    Consumer Advocare Network)

Abstract

Real-life experiences of grassroots patient organizations across a variety of diseases, countries and contexts have been used to develop a four-mode framework of the transition from patient advocacy to partnership, defined by one axis as individual versus collective action and the other axis as activities ‘outside’ or ‘inside’ the system. The four quadrants are labeled as advocacy, activism, reform and broker, and engagement is further refined by whether the participation is ‘pushed’ by the group or ‘pulled’ by the system. There are many examples of patient advocacy groups transitioning through the four quadrants; however, depending on other factors of culture, opportunity and their own preferences, groups may work primarily through one or two quadrants.

Suggested Citation

  • Durhane Wong-Rieger, 2017. "Moving from Patient Advocacy to Partnership: A Long and Bumpy Road," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 271-276, June.
    • Handle: RePEc:spr:patien:v:10:y:2017:i:3:d:10.1007_s40271-017-0216-1
    DOI: 10.1007/s40271-017-0216-1
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    Cited by:

    1. Alain Braillon, 2017. "Comment on: “Moving from Patient Advocacy to Partnership: A Long and Bumpy Road”," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(4), pages 503-503, August.
    2. Dmitry Khodyakov & Sean Grant & Brian Denger & Kathi Kinnett & Ann Martin & Holly Peay & Ian Coulter, 2020. "Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(1), pages 11-21, February.

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