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June 2, 2025 By e-Patient Dave 8 Comments

Why I’m not attending the June 3 meeting

I was invited to attend a policy discussion at the White House complex tomorrow, June 3, 2025. The subject is important to me – access to our health data, plus some items about publishing data about quality of healthcare and about patient safety. These are things I’ve advocated on for years.

But I decided I can’t stomach the idea of attending, and I want to say why, plus say what I would say if I were there. The video is 12 minutes long. More notes below.

[Read more…]

Filed Under: Health data, Health policy, patient safety, Uncategorized Tagged With: health data 8 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

October 4, 2021 By e-Patient Dave 1 Comment

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.)

[Read more…]

Filed Under: FHIR, Government, Health data, Media coverage, Participatory Medicine, patient engagement Tagged With: fhir, health data, interoperability, patient empowerment, patient engagement 1 Comment

November 23, 2020 By e-Patient Dave 2 Comments

#LongCOVID patient researcher Hannah Wei kicks off FHIR DevDays

For two years I’ve blogged about DevDays, the twice-annual software developer conference for the FHIR software standard for health data. November 17-20 was this fall’s edition, and in the opening session, Hannah Wei gave a keynote unlike any other.

Fifteen minute video:

[Read more…]

Filed Under: Coronavirus, FHIR, Health data, Innovation, Patient-centered tech Tagged With: coronavirus, covid, health data, long haul, longcovid, patient centered care 2 Comments

September 26, 2020 By e-Patient Dave Leave a Comment

“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.)

Hey med records experts – I need a consult. My sis needs her records from an independent prac that closed. She’s tried calling. Where should she go next to escalate the request? She’s in NYC @GraceCordovano @HealthPrivacy @ePatientDave

— Cait DesRoches, DrPH (@cmd418) September 26, 2020
[Read more…]

Filed Under: FHIR, Health data Tagged With: health data, health IT, medical records, open notes, OpenNotes, patient advocates, patient empowerment Leave a Comment

June 24, 2020 By e-Patient Dave 1 Comment

Morgan Gleason, 21, wins the second FHIR DevDays Patient Track

Last week at the virtual DevDays conference (for the FHIR software standard that I’ve blogged about so much) we held the second Patient Innovator Track. Watch the winning pitch, 10 minutes long, from Morgan Gleason, fresh out of college. She describes her complex situation and how she’s learned to deal with it manually, and tells the FHIR developer community what she needs – what she wants them to help create, so she can walk into each doctor visit fully prepared without going through all the work she has to do now:

[Read more…]

Filed Under: FHIR, Health data, patient engagement Tagged With: devdays, fhir, health data, health IT, hl7, morgan gleason, patient innovation 1 Comment

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