It is about time that a healthcare journal features examples of patient-leaders who have pioneered activism, innovation, and

The first exemplar in this vein is Casey Quinlan, whom we lost all-too-soon earlier this year on 24th August.

A team of her appreciative colleagues and friends wrote up the first in a new series called “Extraordinary Lives” published in the Journal of Participatory Medicine (JPM) titled “An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan.”

I played a minor role in getting this essay to the finish line, and am grateful to have had the opportunity to do so with the Mighty Casey’s close colleagues Susan Woods, Jan Oldenburg, Danny Van Leeuwen, and Matthew Hudson.

The mission of this “Extraordinary” special new section of JPM is to highlight people whose life and work has re-shaped and inspired patients’ and health citizens’ activation through political engagement, co-design, research, data and technology hacking (in the best sense), and other channels for bolstering peoples’ participation in health care.







Click on the link above for free access to this tribute, where you’ll learn about the Mighty Casey as a performer, journalist, blogger, podcaster, and activist–and a very active participant in her own care once diagnosed with cancer. The graphic here is of the QR code she had tattooed on her sternum in 2014, embedding much of her electronic health record data. You can read the story of that tattoo and its provenance here.

The JPM essay has links to many of Casey’s works available online, and I encourage you to explore them to more fully appreciate the Mighty Casey’s insights, wisdom, and humor.

Among her many published writings and broadcasts, I’ll share this quote which exemplifies my much-missed friend’s approach to participatory health — her call-to-action to all of us she left behind in her loud-and-proud wake:

“So, f**k cancer. I’m not done, and I’m not quitting until I’m dead. And then I want you all to carry me off the battlefield on my shield and then keep fighting. Because that’s the only way we’re going to hack this universe into a more human0friendly place.”