e-Patient Dave

Toward a New Science of Patient Engagement

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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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Announcing the inaugural American “Patient Innovator Track” at FHIR DevDays

“What if technically minded patients had access to their data from hospitals, labs, and apps? What if they could collect the data themselves and massage and format it however they like?”

I am so in love with this. Those are the opening words of this event’s web page. It’s the next step after November’s news about the first edition of FHIR’s Patient Innovator Track … the only such track I know of at any IT conference in the world. YAY!

The full announcement is here including how to apply for the Patient Innovator competition. Four finalists will be flown to DevDays (including travel expenses) to present to the judges and attend the whole conference if they want!

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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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A tale of two patients, redux

This is something I rarely do: I’m reposting, verbatim, a previous post, because its relevance has accelerated. Please give it another read.

In June I wrote here about the ten part blog series I recently did on Tincture, about why I believe the HL7 FHIR standard promises to be so important in achieving the long-felt need for patients to have access to every bit of their health data … to “let patients help” improve care, as my book and TED Talk have said for YEARS. But last fall I gave a talk that expressed my impatience. The title:

“From ‘Let Patients Help’ to ‘Get Out of My Way’:
why some patients want ALL their data now”

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FHIR #DevDays announces Patient Innovator Track finalists: two companies, two patients!

The organizers of the FHIR #DevDays conference next month have announced the four finalists who will come to Amsterdam to present their ideas to a panel of judges. I’ll copy/paste here from the conference’s Patient Innovator Track page:

The following applicants have been invited to present their achievement on Wednesday, November 20: [Alphabetically by presenter’s name]

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