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 ..read more

If you can, please come to the Netherlands in May for this conference. It’s a big deal for me in more ways than one: it’s in Maastricht, the city where the European Union was formed in 1993 and the city where I gave my TED Talk in 2011. Thirteen years ago – and boy has a lot happened since then! From “Let Patients Help” to #PatientsUseAI 2011 was the era when “let patients help” was a strange rallying cry – the very idea of patients reading their doctors’ notes was pioneering and hard to understand … for some doctors. Our other call to action, “Gimme my DaM data” (“Data about Me”), had been b ..read more

Next in the series about the new hashtag #PatientsUseAI. It’s important that medicine know this, because our priorities can be different from the industry’s, and we need this powerful tool too. My first post said that while the world rushes to regulate AI, healthcare is ignoring patients as actual users of the technology. And that’s a huge oversight that we must fix. Patients have real work to do. AI can help do it. The graphic above listed five categories of patient work. The next post in the series was the first: coping with a difficult diagnosis. It spoke of how the great physician Eric T ..read more

On Monday I called for us to start using a new hashtag #PatientsUseAI, because we in the patient community keep seeing doctors and regulators and businesses talk about industry using AI, and nobody’s taking into account that we out here are using it too – and we may have different priorities. The graphic at right spotlighted five ways patients are already using AI. This post is the first in a series about them. September 11, 2023 will live forever in my memory as bringing the most crystal-clear contrast I’ve ever seen between the paternal old guard and an arriving new reality: patients with r ..read more

These are exciting times for patient empowerment and all of medicine! Knowledge is power and generative A.I. is causing an explosion in it. Patients and families are finding that AI tools like GPT-4, Claude.ai and Gemini can profoundly improve their ability to be informed, empowered, and engaged in their care. Participatory medicine! The other day Grace Cordovano, the extraordinary board-certified patient advocate, spoke a sentence that opened new worlds: “People need to realize: Patients are end users of AI.” Presto: new hashtag #PatientsUseAI, and an awareness campaign that’s starting right ..read more

Photo by Puwadon Sang-ngern on Pexels.com 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. I learned a lot about healthcare that year, and a ton more in the sixteen years since, as I’ve advocated globally for healthcare to recreat ..read more

The authors (L to R): Peter Lee, Carey Goldberg, Zak Kohane. Excuse the watermark on the photo: the website where I found says it’s OK to use editorially (e.g. a blog) but doesn’t offer an unwatermarked version! I wrote to them. 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. The authors – a computer whiz (Lee), a patient / journalist (Goldberg ..read more

Scan this QR code! It should produce a human readable summary of parts of my medical profile: my diagnoses (my “conditions” or “problem list”) and my medications. It’s the kind of data you have to enter manually every time you go into a doctor’s office and they hand you a clipboard. This is the outcome of a two-day starter project this weekend at the HL7 FHIR “Connectathon” this weekend in Phoenix. It’s a small part of what “Mighty Casey” Quinlan envisioned when she tattooed a QR code on her chest. In case you haven’t met her yet, she’s the friend and patient activist whose obituary was publi ..read more

Summary: please comment by August 8 The Federal Trade Commission is considering important rule changes to protect private information from careless handling by companies. Submit a comment here. You can type it in, or you can upload a document. You can see comments from others on the Browse Posted Comments page.  You can comment anonymously if you want. You can write your own comment, but it’s also okay to repeat or endorse someone’s else’s comment. The sheer number of comments is important. Don’t think “I have nothing to add.”  The most important message that should come through ..read more

“The administrative burden placed on patients and their care partners to use and share their health records must be addressed.” – Grace Cordovano, Consumer Voices co-chair 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 20 ..read more