e-Patient Dave

Power to the Patient!

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Free kidney cancer patient information day from the hospital that saved me. Please share.

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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Governing wildfires: What we can learn about AI from our history with cars

I asked GPT-4o for an image representing AI as a powerful wild horse pulling a Roman chariot with five people in it. Here’s what I got. Impressive, but not quite right: not a chariot, and not five people(! … how hard is THAT to get right??)

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??

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Dump the jive from JPM & VIVE: seek real change with me at NextMed Health

I’m among the advisory vanguard for NextMed Health, and I’m hoping to speak there too. I hope you’ll come. Register here, or email me for a discount code.

Daniel Kraft’s events are different.

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“From #73cents to FHIR”: keynote at the Redox Connect customer conference

Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.

This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.

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The Autonomic Nervous System: the Medical Frontier of the 21st Century

In July I gave a virtual talk for Dysautonomia International. Dysautonomia is a family of different conditions, sometimes surprisingly diverse, all related to the autonomic nervous system (ANS). A patient-started and patient-run organization, Dysautonomia International is doing a stupendous job of educating and advocating about this field. The purpose of my talk was to encourage the membership, too, to be proactive in speaking out about how they see things.

The video below is the entire 82 minute closing session of the conference. My talk starts around 24:00, but I encourage you to watch those first minutes, to listen in as patient/founder Lauren Stiles presents what the organization has been doing and introduces this year’s three award winners. This is a great advocacy organization!

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Speeches as empowerment: transforming the culture of care

Speaking isn’t just a business – it’s a vehicle for accomplishing what we really need: changing how people think … especially, empowering them to take effective action, to become involved in their health. Here’s a photo from a speech to radiologists, encouraging them to share images with patients:

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