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 (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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Join my live Q&A on “Patient Design” with The Medical Futurist – Tuesday noon ET

This is going to be fun: a live, unscripted, free-for-all “ask me anything” YouTube event on the subject of Patient Design. At noon ET on Tuesday, March 21, just go here. Or go there now and click the little “Notify me” button at bottom left. There’s no registration required, but you can sign up here on EventBrite for reminders.

The host is “The Medical Futurist,” Bertalan Meskó, in Budapest. I’ve had a long history of collaborating with “Berci” (his nickname); my first blog post about him was 13 years ago yesterday, he endorsed my 2013 book Let Patients Help, and I’ve lectured at his course at Semelweiss University.

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Dump the jive from JPM & VIVE: seek real change with me at NextMed Health

I’m among the advisory vanguard for NextMed Health, and I’m hoping to speak there too. I hope you’ll come. Register here, or email me for a discount code.

Daniel Kraft’s events are different.

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Integracare Assisted Living charged us full price. Severely understaffed, they stiffed us.

Recently I’ve posted about horror stories that have happened as investor-driven chains get into hospice (here) and nursing homes (here). More broadly, nursing homes and assisted living are called long-term care, aka LTC.

For our mother and family, LTC has meant Less Than Caring. Last night, I posted My family’s disastrous experience with a growth-driven long-term care company, starting with this:

As many of you know, my mother died in October. What we haven’t disclosed until now is that it happened in horror story #3: she passed after a single week of “respite care” provided by the local outlet of a growing chain of assisted living facilities.

Many people asked who it is, and we’re ready to say: the chain is Integracare, and the local facility near Mom’s home in Annapolis is Bay Village.

Here’s how they advertise themselves. It does not in any way match our experience.

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