e-Patient Dave

Power to the Patient!

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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.

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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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The hard, hard work of supporting a death

monochrome photo of statue
Photo by Alain Frechette on Pexels.com

Much has been said about dying and about how hard a death can be on loved ones. But I’ve never seen anything like this email, which I received this morning. It’s from Myra Isaacs and Jan Oldenburg, who became the primary caregivers and care organizers for “Mighty Casey” Quinlan, who died April 25 after a month in a skilled nursing facility under the supervision of hospice.

In the past I’ve seen bits and pieces of the many tasks listed here but holy cow, when it’s all put together, it’s sobering. It’s a lot of work, at an unhappy and often stressful time.

I myself was not with them at Casey’s side in Richmond – I’m just the messenger who was blown away by this email and asked to publish it.

[Notes: “Mary” was Casey’s given first name at birth. She never liked the name, so adopted her original last name as her first. CeCe (Cecelia) is her sister.]

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