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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When The AI Revolution in Medicine came out in 2023, I called it the best book I’d seen on AI in healthcare, because it resonated deeply with realities I’d heard in thousands of conversations at hundreds of conferences. Today we can say with confidence that co-authors Peter Lee, Carey Goldberg, and Zak Kohane correctly anticipated not just the scientific impact, but the human and institutional realities of what would unfold when generative AI entered medical practice.
And the impact of patients using it.
[Read more…]Eons ago (2023), in ChatGPT’s first year, I blogged about a truly exciting book that had just come out: The AI Revolution in Medicine. Evidently I liked it – here’s the header of that post:
I still haven’t seen anything better on the subject. And here’s the amazing thing: despite the extraordinary rate of change in AI, the book’s held up amazingly well.
So I was thrilled to be invited by lead author Peter Lee to be a guest in a new series he’s doing about the book two years on, on the Microsoft Research podcast. My episode will be out in April.
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This is my first post in months, and isn’t specific to healthcare. I’m doing it for a couple of reasons. First, this is an important new book by one of the sharpest minds I’ve ever known, and second, it’s about a dangerous situation that’s driving a lot of people nuts. The danger is real, and I think there’s a way to not lose our minds over it.
As I approach age 75, I’m in a position to say this bluntly: we live in disturbingly uncertain times, and “we” includes you. I say this as someone who’s spent his whole career working to understand what’s going on under the surface, whether it was in graphic arts or then in healthcare. Such questions require asking a lot of “Why??” so that any improvement you propose can be built on understand what’s eternal.
[Read more…]As long-time readers know, in 2007 I nearly died from a severe case of kidney cancer. One thing that saved me was being very well informed by information I got from an online patient community … information that was valid but did not exist in the medical literature. (They’re now at SmartPatients.)
So my hospital, Beth Israel Deaconess, decided to start producing an annual patient information symposium, as part of the Dana Farber Harvard Cancer Center, to share such cutting-edge information directly to patients (and other clinicians of course). Free! Both online and virtual.
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