e-Patient Dave

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May 15, 2023 By e-Patient Dave 1 Comment

COVID damage: What happened to my blood vessels??

What the heck happened to my blood vessels in January? My cardio-respiratory fitness plunged in one week when I got COVID:

[Read more…]

Filed Under: COVID-19, Device data, Long COVID Tagged With: Cardio Fitness, VO2max 1 Comment

May 11, 2023 By e-Patient Dave 1 Comment

Mighty Casey’s estate sale: broadcasting tech, modern and rare!

People in a hurry can skip to the product listings below, but we hope you’ll take a moment to learn about this fallen hero of the healthcare revolution.

[Read more…]

Filed Under: Health data, Health policy, patient engagement, Patient-centered thinking, podcast 1 Comment

May 8, 2023 By e-Patient Dave 9 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 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 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)

—————

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 9 Comments

May 4, 2023 By e-Patient Dave 6 Comments

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.]

[Read more…]

Filed Under: hospice Tagged With: death, dying, end of life, hospice, Mighty Casey, patient experience 6 Comments

March 20, 2023 By e-Patient Dave Leave a Comment

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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Filed Under: Uncategorized Leave a Comment

February 28, 2023 By e-Patient Dave Leave a Comment

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.

[Read more…]

Filed Under: Culture change, disruption, Events, Patient-centered tech, Patients as Consumers, superpatients Tagged With: disruptive innovation, healthcare, medicine, patient empowerment Leave a Comment

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