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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The Evolution of Who Knows What: A Cluetrain Manifesto for empowered patients

A quarter century ago, in the early years of the Web, a seminal book was published by four marketing wizards: The Cluetrain Manifesto: The End of Business as Usual. Its central point was that the internet was going to completely change marketing, because it made information flow freely, to and between consumers. Importantly, it consisted of 95 theses, patterned explicitly after the 95 theses Martin Luther nailed to the cathedral door in Wittenberg, Germany in 1517.

Painting of Martin Luther nailing his 95 theses to the door of the cathedral was others look on
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Is Beth Israel lying, denying, or complying?

I am really irritated. My hospital has told me they’re not supporting the federally required FHIR standard (a “FHIR endpoint”) to let me access my health data. Is this legal??

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Important update: a robust Twitter thread is drawing lots of answers on whether this is legal. Some of it is “gray area” but among other things:

  • At present, even if their behavior is a violation, there’s no penalty!
  • But by end of 2023, if they don’t have this, they might not get any more payments from CMS!
    • That’s Medicare and Medicaid, which are about 40% of all US hospital revenue
  • There are three separate requirements.
    • System vendors are required (today) to offer a FHIR endpoint to their buyers (hospitals).
      • Well-known large vendors like Epic and Cerner offer it.
      • But Beth Israel Deaconess is its own system developer, and they haven’t created one.
    • Care providers (hospitals etc) aren’t required to buy them and offer them to patients (yet)
    • But by end of 2023, providers will have to offer this to patients, if they want to get paid by CMS (Medicare).

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Resuming the original post:

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Speeches as empowerment: transforming the culture of care

Speaking isn’t just a business – it’s a vehicle for accomplishing what we really need: changing how people think … especially, empowering them to take effective action, to become involved in their health. Here’s a photo from a speech to radiologists, encouraging them to share images with patients:

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Patient engagement in glaucoma: new speech to medical librarians

This is my second speech to NNLM, the Network of the National Library of Medicine. As I said in announcing the first one,

Medical librarians (“medlibs”) have always been a magical resource, to me, because in addition to helping researchers and medicos, they can help ordinary people dig up information they need but don’t know where to find. It’s truly empowering.

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