e-Patient Dave

Power to the Patient!

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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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“From #73cents to FHIR”: keynote at the Redox Connect customer conference

Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.

This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.

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We’re back, part 2: FHIR DevDays Cleveland, with new patient sessions!

I’m thrilled to share the next great news in the recovery and reboot of the healthcare conference world. Two weeks ago I shared “We’re back!” about my next real-life keynote in Berlin – the first in two years. Now this, also the first in two years: FHIR DevDays, the twice-annual conference for software developers working on FHIR, the health data interoperability standard I’ve often blogged about. I’m equally thrilled to again be the DevDays Patient Track lead. It will be so good to see people again and enjoy the random encounters in hallways and pubs.

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Ethics and barriers: BMJ webinars on patient access to medical records

The BMJ (formerly the British Medical Journal) continues to lead the world in patient & public partnership with clinicians, including more coverage of patient empowerment topics than anyone else I know in medical publishing. Some of the issues are unique to Britain but many are global cultural issues – not least being the balance of power between clinicians and the patients they serve.

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