e-Patient Dave

Power to the Patient!

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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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For all who hate computers in medicine: here’s what we got before.

Visit notes from my ENT appointment, Sept 15, 2009

The photo above shows what “visit notes” from a doctor appointment might look like in the era before computers. Just two days before my first speech where I said “Gimme my damn data,” I had an ENT visit, and on the way out I asked for a copy of the doctor’s notes. The clerk snickered out loud and showed it to me, saying, “If you really want it….”

No joke; this is what the doctor had recorded.

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And the Patient Innovation winner is …

At the closing session Friday in Amsterdam, Grahame Grieve (“the father of FHIR”) hands a big check (so to speak) to patient John Keyes, creator of BloodNumbers. He created it for his personal use, but he’s open to adapting it for other uses.

John Keyes, blood disease patient who created BloodNumbers, a simple app to track his ongoing test results.

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