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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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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Call for entries: four patient innovators will win a trip to Amsterdam! Are you one?

Have you done something useful with your medical data to help manage your health? (Or someone else’s)

Perhaps others would find it useful… either your exact tool or your general method! In any case, share it with us, and maybe you’ll get brought to Amsterdam for …

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A tale of two patients: the difference #FHIR hopes to make with free-flowing data

On Friday 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”

[Read more…]