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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An analogy came up last month that I think bears discussion, and I wonder what you think. Everyone knows we have to watch out for AI’s dangers, but the same was true when cars were new. And electricity. And machinery. How do we learn to move forward – to enjoy new power – without horrible risks??
[Read more…]There’s something important in this, so I hope you’ll give it some thought. Patients are being overlooked as users of artificial intelligence (ChatGPT etc), and we need to fix that.
On March 22 I spoke in Boston as the consumer (aka patient) voice on an important panel. The event was the annual AMIA Informatics Summit, and the panel was the latest in an ongoing project on how to be responsible yet effective about AI’s immense potential to improve healthcare. (More on the project below.)
Most of the 90 minute session was reserved for audience Q&A, so for opening statements, each of us five panelists was only given 7 minutes. Yikes! So I did what any empowered person would do: did my best in 7 minutes, then came home and recorded what I wanted to say … which took 20 minutes. :-) For the impatient, the video is above, or you can read the discussion below first.
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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.
[Read more…]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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