e-Patient Dave

Power to the Patient!

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Morgan Gleason, 21, wins the second FHIR DevDays Patient Track

Last week at the virtual DevDays conference (for the FHIR software standard that I’ve blogged about so much) we held the second Patient Innovator Track. Watch the winning pitch, 10 minutes long, from Morgan Gleason, fresh out of college. She describes her complex situation and how she’s learned to deal with it manually, and tells the FHIR developer community what she needs – what she wants them to help create, so she can walk into each doctor visit fully prepared without going through all the work she has to do now:

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A glimpse of how FHIR works, for people who’ve fought to get their data

This is a quick post without a lot of explanation, targeted to perhaps a small number of people but perhaps also intriguing to a lot more. This image is a quick summary of the post below:

[What’s FHIR? I’ve been blogging about it for more than a year; here are all the posts, newest first, though if you’re new to the concept please start here. This post doesn’t require understanding FHIR’s significance, but it sure helps.]

The context: someone needs to get their health data.

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A decade advocating for OpenNotes

Today in an email thread I realized it’s a decade since the OpenNotes work started, via Tom Delbanco and Jan Walker, and now promoted so brilliantly by Liz Salmi. How great that back then my PCP Danny Sands and I were among the first crew of OpenNotes study participants!

I decided to mark the occasion by creating an /OpenNotes page on my site, listing all the blog posts and articles that have emerged as part of the work.

(Interesting to observe: before cancer rearranged my life, I don’t think I ever stuck with any cause for ten years straight. Funny how that happens.)

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“HIPAA: You aren’t a Covered Entity if you don’t bill electronically”

[Readers who are familiar with HIPAA can skip to the tweets below.]

Recently there’s been a lot of discussion about how the 1996 HIPAA law, whose regulations govern health data privacy (and access), is not sufficient for today’s world of apps and digital everything. For instance, the regs say docs & hospitals generally have to be careful with your medical records – but apps and wearables like Fitbits didn’t exist at the time, so HIPAA says nothing about what apps learn about you, nor what such companies do with it. Same for sites like Facebook and Amazon’s ever-listening Alexa. So everyone in the field agrees HIPAA needs to be replaced.

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