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

Current Opinion


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.


  1. 1.
    Stahnisch FW, WolbringG. Panel on the 50th Anniversary of the Thalidomide Catastrophe. In: The proceedings of the 20th anniversary history of medicine days conference 2011: The University of Calgary, Faculty of Medicine, Alberta, Canada. Cambridge Scholars Publishing; 2015.Google Scholar
  2. 2.
    Fintel B, Samaras A, Carias E. The thalidomide tragedy: lessons for drug safety and regulation. Helix Magazine. 2009. Accessed 2 Nov 2016.
  3. 3.
    Birrell I. Good health viewpoint: 2,000 dead and still no justice for the victims of Britain’s blood transfusion scandal. Mail on Sunday, 18 Oct 2010.Google Scholar
  4. 4.
    Picard A. Krever Inquiry. The Canadian Library. Accessed 2 Nov 2016.
  5. 5.
    Feldman EA. Deconstructing the Japanese HIV scandal. JPRI Working Paper No. 30: February 1997.Google Scholar
  6. 6.
    Thompson AG. The meaning of patient involvement and participation in health care consultations: a taxonomy. Soc Sci Med. 2007;64(6):1297–310.CrossRefPubMedGoogle Scholar
  7. 7.
    Vahdat S, Hamzehgardeshi L, Hessam S, et al. Patient involvement in health care decision making: a review. Iran Red Cres Med J. 2014;16(1):e12454.CrossRefGoogle Scholar
  8. 8.
    Zoller HM. Health activism: communication theory and action for social change. Commun Theory. 2005;15(4):341–64.CrossRefGoogle Scholar
  9. 9.
    Rabeharisoa V, Moreira T, Akrich M. Evidence-based activism: patients’ organisations, users’ and activist’s groups in knowledge society. CSI Working Papers Series No. 033, 2013. Accessed 2 Nov 2016.
  10. 10.
    Fondation Internationale TIerno et MAriam. Accessed 2 Nov 2016.
  11. 11.
    Smiciklas M. The social media advocacy model (infographic). 15 Feb 2012. Accessed 2 Nov 2016.
  12. 12.
    Wong-Rieger D, Claxton W, Vines R, et al. An Asia-Pacific alliance for rare diseases. Patient. 2015;8(1):11–7.CrossRefPubMedGoogle Scholar
  13. 13.
    National Health Council and Genetic Alliance. Dialogue framing paper: advancing meaningful patient engagement in drug research, development, and approval. National Health Council and Genetic Alliance; 2015. Accessed 2 Nov 2016.
  14. 14.
    De Boer M. From passenger to pilot, the expanding role of patients and patient organisations in drug development. Available at: Accessed 2 Nov 2016.
  15. 15.
    Dang A, Likhar N, et al. Patient advocacy and changing paradigm in drug access. Presented at the ISPOR 21st Annual International Meeting, 21–25 May 2016, Washington Hilton, Washington, DC, USA.Google Scholar
  16. 16.
    Murphy MF. Rare diseases: meeting the unique challenges of orphan drug development. Accessed 2 Nov 2016.
  17. 17.
    Mavis M, Le Cam Y. Involvement of patient organisations in research and development of orphan drugs for rare diseases in Europe. Mol Syndromol. 2012;3:237–43.Google Scholar
  18. 18.
    FDA Patient Network: Section 1137: patient participation in medical product discussions. Accessed 2 Nov 2016.
  19. 19.
    European Medicines Agency. Eligible patients and consumers organisations. Accessed 2 Nov 2016.
  20. 20.
    Scher DL. How patient-centric care differs from patient-centered care. The Digital Health Corner. Posted 3 Mar 2012. Accessed 2 Nov 2016.
  21. 21.
    Evans H. Thalidomide: how men who blighted lives of thousands evaded justice. The Guardian. 14 November 2014. Accessed 2 Nov 2016.
  22. 22.
    Committee of Ten Thousand. Accessed 2 Nov 2016.
  23. 23.
  24. 24.
    The FH Foundation. Accessed 2 Nov 2016.
  25. 25.
    Doyle M. Peer support and mentorship in a US rare disease community: findings from the cystinosis in emerging adulthood study. Patient. 2015;8(1):65–73.CrossRefPubMedGoogle Scholar
  26. 26.
    European Patients’ Academy. Accessed 21 Dec 2016.
  27. 27.
    Novas C. Orphan drugs, patient activism and contemporary healthcare. Quaderni. No. 68, Militantisme médicalet fabrique des politiques de santé. Hiver. 2008–9:13–23.Google Scholar
  28. 28.
    An J-G. Korean patients’ voices: from shouting to act. Presented at the 7th Global Patients Congress, International Alliance of Patients’ Organizations. April 2016. Accessed 2 Nov 2016.
  29. 29.
    Hollin IL, Peay HL, Bridges J. Caregiver preferences for emerging Duchenne Muscular Dystrophy treatments: a comparison of best-worst scaling and conjoint analysis. Patient. 2015;8(1):19–27.CrossRefPubMedGoogle Scholar
  30. 30.
  31. 31.
    Rare Cancers Australia. Accessed 2 Nov 2016.
  32. 32.
    Brazilian Association of Lymphoma and Leukemia. A Accessed 2 Nov 2016.

Copyright information

© Springer International Publishing Switzerland 2017

Authors and Affiliations

  1. 1.Canadian Organization for Rare DisordersTorontoCanada
  2. 2.Consumer Advocare NetworkTorontoCanada

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