Power to the Patient!
I was invited to attend a policy discussion at the White House complex tomorrow, June 3, 2025. The subject is important to me – access to our health data, plus some items about publishing data about quality of healthcare and about patient safety. These are things I’ve advocated on for years.
But I decided I can’t stomach the idea of attending, and I want to say why, plus say what I would say if I were there. The video is 12 minutes long. More notes below.
As the graph at right shows, the biggest part of the US budget is Health & Human Services. And five weeks ago they announced they’ll reduce public participation in their spending decisions: what they support and what they cut off.
This is a desperate mistake for the public’s interest, and thus for patients, because it’s now much easier for the agency to publish rules that the public might hate. Watch out. They promised a “new era of radical transparency” but this is the opposite. That’s fraud in the Senate confirmation process, and for your healthcare that’s not good.
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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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