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June 5, 2023 By e-Patient Dave Leave a Comment

Patient Voices workgroup is Wednesday’s keynote at FHIR DevDays

Montage of Brenda Shipley photo, DevDays website and Sequoia press release

“The administrative burden placed on patients and their care partners to use and share their health records must be addressed.” – Grace Cordovano, Consumer Voices co-chair

I’m thrilled that at this week’s DevDays FHIR developer conference, the patient keynote will be delivered by Bren Shipley, head of the Consumer Voices workgroup at the Sequoia Project.

For ten years the Sequoia Project has advocated for nationwide health information exchange, so their interest in FHIR is obvious. In February they launched a new Consumer Voices workgroup (press release), which parallels the sentiment of my 2019 post “HL7 makes it official: FHIR exists to serve patient needs.“

Sequoia’s Brenda (“Bren”) Shipley will be the speaker. We’ve never met (until today) and I won’t let the cat out of the bag regarding her talk, but suffice it to say, she and her eight-member patient workgroup independently developed principles based on real world stories that prove again how much suffering can result when health data is not at the point of need.

We must fix this. Welcome to Sequoia’s Consumer Voices! FHIR’s Patient Empowerment workgroup has found an important new ally.

Filed Under: FHIR, Health data, Patient-centered thinking Tagged With: consumer engagement, fhit, hl7, interoperability, patient engagement Leave a Comment

May 8, 2023 By e-Patient Dave 10 Comments

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??

—————

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).

—————

Resuming the original post:

[Read more…]

Filed Under: FHIR, Government, Health data, Health policy, patient engagement Tagged With: Cures Rule, fhir, gimme my damn data, health IT, medical records, patient engagement 10 Comments

November 9, 2022 By e-Patient Dave Leave a Comment

“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.

[Read more…]

Filed Under: Events, FHIR, Health data, Leadership, public speaking Tagged With: #gmdd, Cures Act, Cures Rule, fhir, health data, health IT, patient empowerment, patient engagement, Redox Leave a Comment

April 25, 2022 By e-Patient Dave Leave a Comment

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:

[Read more…]

Filed Under: Clinical trials, Culture change, Events, Innovation, Participatory Medicine, patient engagement, public speaking Tagged With: clinical trials, healthcare speakers, participatory medicine, patient empowerment, patient engagement Leave a Comment

April 14, 2022 By e-Patient Dave 1 Comment

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.

[Read more…]

Filed Under: Glaucoma, patient engagement Tagged With: blindness, eye drops, glaucoma, home tonometry, patient empowerment, patient engagement, tonometry 1 Comment

November 15, 2021 By e-Patient Dave 9 Comments

Time to practice what I preach, again: this time it’s glaucoma.

I have a new diagnosis. This post starts with a little history for context.


Ten years ago, three years into evangelizing patient engagement based on my kidney cancer story, I posted Time to practice what I preach: I have skin cancer again. Noting the pattern that highly engaged patients everywhere follow, I blogged that it was time to …

[Read more…]

Filed Under: Participatory Medicine, patient engagement, Patient-centered tech Tagged With: eye pressure, glaucoma, iop, ophthalmology, patient empowerment, patient engagement, tonometry 9 Comments

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