Update 3/19: We’ve opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration.
This news hit us worse than a lightning bolt on Sunday 3/12. Friends of Casey Quinlan (@MightyCasey) have known she was coping with a recurrence of her breast cancer, and it wasn’t going well. But on Sunday she told breast cancer health data activist Andrea Downing that she’s going to enter hospice.
This is simply not possible. Invincible heroes and sheroes do not die. But, as they say, cancer sucks.
If you don’t already know Casey, here’s the whole picture in ten minutes. As you’ll see, no text description could possibly capture the Casey experience.
[If you didn’t watch the video, here’s the story of the QR code she had tattooed onto her sternum. It links to her online medical record, as a protest against healthcare’s lack of interoperable records. At right is a full photo.]
We’ll have more to say about Casey soon. (“I ain’t dead yet!,” she says with characteristic decorum.) For now here are a few high-level points of her interaction with healthcare globally (beyond the video) that illustrate why so many are hit so hard by this news.
- Describes herself as “a warrior – descended from admirals” (literally – her grandfather and another relative)
- Former network news video wizard (one of those people in the van on the street) and stand-up comedian
- Active in the Lown Institute‘s healthcare work (social responsibility) and the Right Care Alliance
- Famously “flamboyant” personality (and vocabulary)
- Part of The Light Collective, for “the collective rights, interests, and voices of patient communities in health tech.”
- Much work on Shared Decision Making at The Dartmouth Institute and elsewhere, including the Cochrane Collaborative on high quality evidence
- A key person in developing the Patients Included charters
- Healthcare is Hilarious podcast
- Master of popular culture and many outrageous memes
- And much more.
To spread the word on social media:
- My tweet about this post and the SPM LinkedIn post
- The original tweet about Casey’s status (with less info but hundreds of replies and RTs) and the matching post on LinkedIn.
- Direct link to this post
For now, here’s one of her two jackets in Regina Holliday’s Walking Gallery of Healthcare. Painted in 2015, it was a response to hospitals who didn’t want to be forced to let patients get at their data, much less help patients do so. A regulation was proposed that would require x% of a hospital’s patients to use the new EMR systems, but the hospital industry got it watered down so that only one patient would be required, to satisfy Federal regulations.
Casey’s response was titled “I got your one patient here,” quoting “The Dude” (Jeff Bridges) in “The Big Lebowski”:
Of course now we all know that our movement won, on this point: as of last October 6, all patient data must be available not just online for patient viewing, but for downloading as well.
A warrior, indeed. More to follow.
If you have Casey stories to share, put ’em in comments.
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Photo credits: Casey at Medicine-X 2013 by SPM co-founder Gilles Frydman; Walking Gallery jacket by Regina Holliday.
I have not known Casey well, but I’ve heard her name over and over. I wish her a peaceful and kind journey toward whatever awaits us once we have dropped this “mortal coil.”
Casey, Mighty F’ing Casey, you have been the engine of change that has forever made the world a better place for all of us – especially patients. Every time we actually GET our medical records, every time we are treated as an EQUAL by our doctors, every time we say NO to invasive data grabbing, we’ll think of you. And we’ll grab a gin and we’ll raise a mighty toast.
Much love to you, Casey. You have always been and always will be an inspiration.
I first met the Mighty Miss Casey on twitter (at a time when the bird app made positive messaging and connections take flight). In truth, her virtual power was a bit intimidating. When we did meet – at MedX 2013 – intimidation was immediately replaced by awe and gratitude. Awe because Casey is Awesome in her smarts, cleverness, spirit, knowledge, tenacity, humour (note Canadian spelling ;-) and beauty – inner and outer. Gratitude because she was so generous with this patient in my participatory journey: ensuring my message got to the right virtual audiences and celebrating my unconventional take on medication administration confusion (she widely shared my 10-second MedSchool video series) and (ironically, now) appreciated my approach to the tricky topic of end of life. I’m so glad I got to share hugs, and conversation and debates and celebrations with the one and only Mighty Casey.