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. 2023 Dec 12:15:e54527.
doi: 10.2196/54527.

An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan

Susan S Woods  1 , Jan Oldenburg  2 , Daniel van Leeuwen  3 , Jane Sarasohn-Kahn  4 , Matthew F Hudson  5
Affiliations

An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan

Susan S Woods et al. J Particip Med. .

Abstract

The Journal of Participatory Medicine introduces Extraordinary Lives, a new journal section celebrating the voices and work of steadfast advocates of participatory medicine that we have lost. This inaugural essay spotlights Casey Quinlan, a patient activist who effectively used her humor and incisive analysis of health care to encourage others to strive for meaningful change. A first-generation "professional patient," Casey served as a role model who inspired many to share their stories and achieve genuine partnerships in care delivery. A maker of "good trouble," her voice and stance were part of her power and influence in disrupting the status quo. We present her fight for personal access to health data, her aspiration for personally customized evidence, and her drive for all people to control their health and their health care.

Keywords: co-design; co-production; electronic health record; evidence-based medicine; open notes; participatory medicine; patient empowerment; patient engagement; patient portal; shared decision-making.

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Conflict of interest statement

Conflicts of Interest: SSW and MFH are editors-in-chief of the Journal of Participatory Medicine. DvL is an associate editor of the Journal of Participatory Medicine.

Figures

Figure 1
Figure 1
“Gimme My Damn Data - Simplified,” a cartoon by Casey Quinlan (reproduced from Mighty Casey Media [19], which is published under Creative Commons 4.0 Non-Commercial License [20]).
See this image and copyright information in PMC

References

    1. Berwick DM. Salve Lucrum: the existential threat of greed in US health care. JAMA. 2023 Feb 28;329(8):629–630. doi: 10.1001/jama.2023.0846.2801097 - DOI - PubMed
    1. Palmer VJ. The participatory zeitgeist in health care: it is time for a science of participation. J Particip Med. 2020 Jan 10;12(1):e15101. doi: 10.2196/15101. https://jopm.jmir.org/2020/1/e15101/ v12i1e15101 - DOI - PMC - PubMed
    1. deBronkart D, Oldenburg J. “Mighty Casey” Quinlan: outspoken patient activist. BMJ. 2023 Aug 03;:p1779. doi: 10.1136/bmj.p1779. - DOI
    1. Hung C. A tribute to Casey Quinlan: advocate and Renaissance woman. Healthcare IT Today. 2023. Aug 28, [2023-10-28]. https://www.healthcareittoday.com/2023/04/28/a-tribute-to-casey-quinlan-... .
    1. Quinlan C. Cancer for Christmas: Making the Most of a Daunting Gift. North Haven, CT: Peppertree Press; 2009.

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