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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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.
I am really irritated. My hospital has told me they’re not supporting the federally required FHIR standard (a “FHIR endpoint”) to let me access my health data. Is this legal??
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Important update: a robust Twitter thread is drawing lots of answers on whether this is legal. Some of it is “gray area” but among other things:
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Resuming the original post:
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Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.
This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.
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I’m thrilled to share the next great news in the recovery and reboot of the healthcare conference world. Two weeks ago I shared “We’re back!” about my next real-life keynote in Berlin – the first in two years. Now this, also the first in two years: FHIR DevDays, the twice-annual conference for software developers working on FHIR, the health data interoperability standard I’ve often blogged about. I’m equally thrilled to again be the DevDays Patient Track lead. It will be so good to see people again and enjoy the random encounters in hallways and pubs.
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