Power to the Patient!
I’ve been learning everything I can about what AI will do to help healthcare achieve its potential, and especially how it will help e-patients be stronger contributors. The game’s not over (this game will never be over) but so far, this is the book! The AI Revolution in Medicine: GPT-4 and Beyond.
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Regular readers know about “Mighty Casey” [left]: a very outspoken advocate for patient centered care who died in April. As her BMJ obituary said, she notoriously had a QR code tattooed onto her chest, linking to her complete medical history … because nobody in the health system could or would gather it all. So she did it herself. That’s an empowered patient!
Well, it got the attention of people working in FHIR health data standards. And this past weekend, at an event called a “Connectathon,” they hacked together a starter version of Casey’s dream.
Here’s the result – scan this QR code with your phone (or follow this link … same thing). It produces a human readable version of some of my own medical data.
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Of the hundreds of conferences I’ve spoken at, none is more fun and relevant to patient empowerment through health data than FHIR DevDays, for several reasons:
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I’m thrilled that at this week’s DevDays FHIR developer conference, the patient keynote will be delivered by Bren Shipley, head of the Consumer Voices workgroup at the Sequoia Project.
For ten years the Sequoia Project has advocated for nationwide health information exchange, so their interest in FHIR is obvious. In February they launched a new Consumer Voices workgroup (press release), which parallels the sentiment of my 2019 post “HL7 makes it official: FHIR exists to serve patient needs.“
Sequoia’s Brenda (“Bren”) Shipley will be the speaker. We’ve never met (until today) and I won’t let the cat out of the bag regarding her talk, but suffice it to say, she and her eight-member patient workgroup independently developed principles based on real world stories that prove again how much suffering can result when health data is not at the point of need.
We must fix this. Welcome to Sequoia’s Consumer Voices! FHIR’s Patient Empowerment workgroup has found an important new ally.
A quarter century ago, in the early years of the Web, a seminal book was published by four marketing wizards: The Cluetrain Manifesto: The End of Business as Usual. Its central point was that the internet was going to completely change marketing, because it made information flow freely, to and between consumers. Importantly, it consisted of 95 theses, patterned explicitly after the 95 theses Martin Luther nailed to the cathedral door in Wittenberg, Germany in 1517.
