Power to the Patient!
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.
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…]
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…]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:
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.)
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: