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 Long COVID Survival Guide: essential new book with first-hand patient reality

I’m burning my way through this book, which was just released last week. It’s a compilation of first-person essays and advice from twenty Long COVID patients and experts. Curated by long-hauler Fiona Lowenstein, The Long COVID Survival Guide strikes me as street-level gut-punch practical. I don’t think any of us – patient, family, clinician or government – can feel we understand this condition without reading these essays.

I was hooked when I discovered, in the first patient story, that hives can be a result of Long COVID … which explains the weird, unexplained hives my wife had 4-6 weeks after COVID. Nothing like some front-line patient reality!

That’s a strong example of a big shift that’s happening in medicine: shifting away from expecting doctors to know everything important, and toward doctors actively partnering with the sick people. And by “partnering” I don’t mean asking patients’ opinions: I mean actually sharing the work, acknowledging the value of patients’ work, and sharing decision making – not just on individual cases but on development of remedies and priorities for research.

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The Autonomic Nervous System: the Medical Frontier of the 21st Century

In July I gave a virtual talk for Dysautonomia International. Dysautonomia is a family of different conditions, sometimes surprisingly diverse, all related to the autonomic nervous system (ANS). A patient-started and patient-run organization, Dysautonomia International is doing a stupendous job of educating and advocating about this field. The purpose of my talk was to encourage the membership, too, to be proactive in speaking out about how they see things.

The video below is the entire 82 minute closing session of the conference. My talk starts around 24:00, but I encourage you to watch those first minutes, to listen in as patient/founder Lauren Stiles presents what the organization has been doing and introduces this year’s three award winners. This is a great advocacy organization!

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What I’m doing now

This is my public declaration of priorities, as inspired by the /now page movement started by Derek Sivers. I learned about this (as with so many things) from Susannah Fox.

Speaking:

I’m an evangelist for a new view of health and care, centered around patient autonomy and empowered partnerships with enlightened medical professionals who welcome collaboration. I spread the word through speeches that connect with different audiences’ varying perspectives, as well as through my writings.

I’m thrilled that live conferences are resuming! Zoom meetings are just not the same, but I continue to speak virtually (recent review) as well.

Patient data access:

I’m a co-founder and (now retiring) co-chair of the HL7 Patient Empowerment workgroup, specifically focusing on expressing the voice of the patient in the FHIR health data standard. (Learn what it is and why it’s important.) As with everything in the HL7 standards organization, all meetings and proceedings are fully open and transparent (though sometimes quite nerdy); you’re welcome to attend. The workgroup’s home page is bit.ly/hl7patients and weekly calls are at 1pm ET Thursday; projects have lots going on too, and are happy to have new participating members.

I’m an avid participant in the semi-annual FHIR DevDays conferences, as leader of its Patient Track.

My latest personal health issue:

After a failed cataract operation in 2020 I acquired glaucoma in 2021 and have lost 30% of the vision in my left eye. I’ve been immensely frustrated at how ophthalmology is not participatory yet and am working on it. First steps: (1) joined the FitEyes e-patient community, and (2) started measuring my eye pressure at home, instead of only at occasional doctor visits – same as people do with blood pressure, bathroom scales, baby thermometers etc. I’m using the iCare Home tonometer. You can’t manage what you can’t measure; knowledge is power.

Thinking:

One motto I’ve acquired is “If you live long enough, things change!” This is a huge factor in my continuing work on changing the culture of healthcare: for care to achieve its potential we need to understand the assumptions that underlie how health and care are structured today.

Current fascination: “The evolution of who knows what.” Did you know there’s only been one century in all of human history where doctors actually knew what they were doing, and patients did not and could not? That century is over, and it changes how healthcare might achieve its potential.

Reading:

I listen to audio books and podcasts constantly, including four themes beyond news:

  • The nature of knowledge, science, and human thought: The Structure of Scientific Revolutions, Superforecasting, Thinking Fast & Slow, Leadership on the Line, Sapiens, Homo Deus …
  • Healthcare’s evolution and limitations: The Emperor of All Maladies, How Doctors Think, The Patient Will See You Now, The Anatomy of Hope, The Gene, The Hospital: Life, Death, and Dollars in a Small American Town, An American Sickness…
  • How business methods have changed since my early-career days in product management: Blitzscaling, The Effortless Experience, Radical Focus, Platform Revolution …
  • Anti-racist self-education: How the South Won the Civil War, The Mismeasure of Man, How to Be an Anti-Racist, Why I’m No Longer Talking to White People about Race…

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New podcasts & webinars #1: “Interoperability & Equity” for HIMSS

There’s been an interesting surge in evangelist activity recently: I’ve been involved in several podcasts and webinars, all giving new life to the “gimme my data” movement. Here’s one that went live today on the HIMSS Learning Network. (It’s free but you may need to register.)

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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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