"When Patients Take AI into Their Own Hands": #PatientsUseAI in NEJM AI

"As the medical establishment cautiously tests AI for clinical use, desperate patients are already starting to use it"

This is the second post on this new Substack. The intro post is here.

I’m thrilled that NEJM AI, the new AI publication of the prestigious New England Journal of Medicine, has just published an excellent column on my favorite subject: patients as users of AI, not just “consumers” of medical service. Here’s the column’s delightful headline and abstract:

Yes, our own hands! Because we have needs too, and sometimes it takes weeks or months till our next appointment, and we still have our symptoms or questions while we wait. Besides, sometimes we just want to know something or explore ideas. (That’s called being an engaged patient, right?) AI tools like GPT, Claude, Gemini and Perplexity let us explore on our own and be better prepared for our next appointment. Who doesn’t want that?

The headline is important: nearly everything I see about AI in medicine is about what doctors and companies are doing with it in their work. And if people don’t realize that patients have work to do, too, then patients’ needs will be overlooked, both by government and by product developers. (For more on this see the video in our previous post.) So getting this issue in the spotlight in a top journal is invaluable.

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A main purpose of this new Substack will be to answer, “What the heck would a patient do with AI??” Carey’s column starts with this example from a 27 year old venture capitalist:

“A year ago, my body was at war with itself, and my condition was deteriorating faster than my specialists could understand it,” he wrote. “And then GPT became my copilot.”

Back in January he tweeted his entire story of how the many specialists he saw were all good in their own specialties but had zero skill (or even training!) in how to deal with a complex disorder like his. Goldberg writes of

…specialists who take months to book and can devote only brief attention to a patient with complex, chronic diseases that span specialties. The AI has infinite time and patience, he wrote, and its store of knowledge is so vast that it “is extraordinarily good at connecting the dots between disparate medical specialties.”

It reminds me of the words of board-certified patient advocate Grace Cordovano on LinkedIn last month:

Patients are already transforming their clinical care with AI because we know NO ONE IS COMING TO SAVE US.

NB: she was commenting about a panel she’d been on where the moderator, an academic, said “Clinical transformation with AI is easier without patients.” She wrote “The words hit me like a slap; I flinched in my seat.” Because, ladies and gents, that is how you end up with healthcare that is not patient-centered.

Yes, #PatientsUseAI. Patients take AI into their own hands … including when care is going great! Because we have work to do in healthcare, too.

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“Patient Portal” is the name of Carey Goldberg’s column. On my blog last fall I reviewed The AI Revolution in Medicine: best book by far on AI in healthcare; she is the co-author who covered the patient perspective.

Her first Patient Portal column, in December, was a fantasy in which she imagined what she wanted to hear from her providers about AI: encouragement for her to use AI, including ways that some patients already are.

“Dear Patient: We would like you to know about a powerful new tool that could help you achieve better health. …”

Thank you to NEJM AI for leading the way in helping healthcare realize that patients are users, too. Stay tuned for stories and some thought leadership.

If you have stories, please let us know! dave@epatientdave.com