Power to the Patient!
This post is a departure from my usual: it’s about a specific company, for a specific reason. First, some background.
Since 2007, Thanksgiving has been a time of reflection for me. That’s the year I was diagnosed as almost dead, yet by Fall I got to hear “looks like you beat it!” What a Thanksgiving that was.
I know firsthand that when a person like me is in need, being cared for and about makes all the difference.
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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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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.
People in a hurry can skip to the product listings below, but we hope you’ll take a moment to learn about this fallen hero of the healthcare revolution.
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In August Medical Futurist Bertalan Meskó and I published Patient Design: The Importance of Including Patients in Designing Health Care in JMIR, in the Journal of Medical Internet Research (JMIR). It ties together aspects of both our work. He’s a medical futurist, less than half my age, with a clear vision of how medicine will work in a future unencumbered by today’s limits. For me, an advocate for patient empowerment, it’s rooted in patients having the power to get the care they want. Our views come together in the idea of patients designing the care they want. From our abstract:
[Read more…]… genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed.
In the twelve years I’ve been studying the evolution of medical science and the sociology of healthcare – the relationships – I’ve never read anything that stopped me in my tracks with how it summed it all up so quickly. This one, by Talya Miron-Shatz, did. Click through and give it a read – it’s not long.
