e-Patient Dave

Power to the Patient!

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Casey Quinlan’s QR code dream starts coming to life – using FHIR!

Regular readers know about “Mighty Casey” [left]: a very outspoken advocate for patient centered care who died in April. As her BMJ obituary said, she notoriously had a QR code tattooed onto her chest, linking to her complete medical history … because nobody in the health system could or would gather it all. So she did it herself. That’s an empowered patient!

Well, it got the attention of people working in FHIR health data standards. And this past weekend, at an event called a “Connectathon,” they hacked together a starter version of Casey’s dream.

Here’s the result – scan this QR code with your phone (or follow this link … same thing). It produces a human readable version of some of my own medical data.

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Patient Voices workgroup is Wednesday’s keynote at FHIR DevDays

Montage of Brenda Shipley photo, DevDays website and Sequoia press release

“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 2019 post “HL7 makes it official: FHIR exists to serve patient needs.“

Sequoia’s Brenda (“Bren”) Shipley will be the speaker. We’ve never met (until today) and I won’t let the cat out of the bag regarding her talk, but suffice it to say, she and her eight-member patient workgroup independently developed principles based on real world stories that prove again how much suffering can result when health data is not at the point of need.

We must fix this. Welcome to Sequoia’s Consumer Voices! FHIR’s Patient Empowerment workgroup has found an important new ally.

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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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We’re back, part 2: FHIR DevDays Cleveland, with new patient sessions!

I’m thrilled to share the next great news in the recovery and reboot of the healthcare conference world. Two weeks ago I shared “We’re back!” about my next real-life keynote in Berlin – the first in two years. Now this, also the first in two years: FHIR DevDays, the twice-annual conference for software developers working on FHIR, the health data interoperability standard I’ve often blogged about. I’m equally thrilled to again be the DevDays Patient Track lead. It will be so good to see people again and enjoy the random encounters in hallways and pubs.

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#LongCOVID patient researcher Hannah Wei kicks off FHIR DevDays

For two years I’ve blogged about DevDays, the twice-annual software developer conference for the FHIR software standard for health data. November 17-20 was this fall’s edition, and in the opening session, Hannah Wei gave a keynote unlike any other.

Fifteen minute video:

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