e-Patient Dave

Power to the Patient!

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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 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 Medicare(!)
  • There are three separate requirements.
    • System vendors are required (today) to offer this feature to their buyers (hospitals).
    • 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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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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“My doc’s practice closed. Need my chart. What do I do?”

That’s a paraphrase of the starting tweet in a valuable thread today from a colleague in OpenNotes, Cait DesRoches. Here are the tweets. (I hope this all comes through on the blog; email subscribers, if necessary, click the headline to read this online.)

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Morgan Gleason, 21, wins the second FHIR DevDays Patient Track

Last week at the virtual DevDays conference (for the FHIR software standard that I’ve blogged about so much) we held the second Patient Innovator Track. Watch the winning pitch, 10 minutes long, from Morgan Gleason, fresh out of college. She describes her complex situation and how she’s learned to deal with it manually, and tells the FHIR developer community what she needs – what she wants them to help create, so she can walk into each doctor visit fully prepared without going through all the work she has to do now:

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FHIR on the horizon: ten part blog series

I want to let you know about a couple of important developments. First, I’ve started blogging on another site, Tincture, as well as here; second, there’s important news in the world of health I.T. (or personal health data or whatever you want to call it).

First, the health IT news: there seems to be good stuff happening! An international data transfer standard called FHIR (pronounced “fire”) has been in development for years, and is finally nearing the time when it will (we hope) change the world for those of us who want unfettered access to all our health data.

It’s not very visible to the general public yet, but a Google Image search shows tons of different graphics illustrating different perspectives. Google shows different people different things but here’s what I get:

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