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

Susan S Woods; Jan Oldenburg; Daniel van Leeuwen; Jane Sarasohn-Kahn; Matthew F Hudson

doi:10.2196/54527

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

J Particip Med. 2023 Dec 12:15:e54527. doi: 10.2196/54527.

Authors

Susan S Woods¹, Jan Oldenburg², Daniel van Leeuwen³, Jane Sarasohn-Kahn⁴, Matthew F Hudson⁵

Affiliations

¹ Tufts University School of Medicine, Boston, MA, United States.
² Participatory Health Consulting, Richmond, VA, United States.
³ Health Hats, Boston, MA, United States.
⁴ Think-Health LLC, Philadelphia, PA, United States.
⁵ Prisma Health, Greenville, SC, United States.

PMID: 38085561
PMCID: PMC10751629
DOI: 10.2196/54527

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.

©Susan S Woods, Jan Oldenburg, Daniel van Leeuwen, Jane Sarasohn-Kahn, Matthew F Hudson. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 12.12.2023.