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

Durhane Wong-Rieger ()
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Durhane Wong-Rieger: Canadian Organization for Rare Disorders

The Patient: Patient-Centered Outcomes Research, 2017, vol. 10, issue 3, No 3, 276 pages

Abstract: 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.

Keywords: Thalidomide; Duchenne Muscular Dystrophy; Familial Hypercholesterolemia; Cystinosis; Patient Advocacy (search for similar items in EconPapers)
Date: 2017
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Citations: View citations in EconPapers (2)

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DOI: 10.1007/s40271-017-0216-1

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