Patients can now access all their health records digitally

This is great. Now let us delete them.

> Reminder #5 – How IB actors make EHI available for access, exchange, and use can and will vary based on who the IB actor is, their technological sophistication, and who it is that is seeking to access, exchange or use an IB actor’s EHI. > The information blocking regulations do not require IB actors to adopt or use certain technologies or platforms. IB actors may use “patient portals,” other web interfaces, application programming interfaces (APIs), and a multitude of technologies and platforms to make EHI available for access, exchange, or use. The information blocking regulations focus on practices that are likely to interfere with, prevent, or materially discourage access, exchange, or use of EHI. For example, while the information blocking regulations don’t prescribe specific technologies, how IB actors design, implement, use, or limit technologies in relation to the access, exchange, or use of EHI could implicate the information blocking regulations.

This is the part I had to go looking for. I've been in this space for just a bit now, and I can tell you that like most of American healthcare, it's a shitshow. Get ready to develop an app against your doctor's EHR API if they don't expose this via a patient portal.

I don't think the docs are too happy about giving you access to "their" work product, AKA your health data. And to some extent I sort of see where they're coming from - if they were photographers, they'd actually hold copyrights over images they take of you.

But the goals here are at least laudable and there is some rather glacial advancement.

The title should be amended to point out that it concerns only US

I really want to be optimistic about this but as a us consumer of us healthcare its almost impossible to get even my vision prescription.

I'm betting whatever I get from the hospital is in an ocean of binary formats too arcane to digest, from a graveyard of bankrupt health data applications and in a shorthand I'll never comprehend because the legend to it is in some healthcare billing system only god and bill collectors can see.

One big limitation of this standard is imaging data. X-Ray radiographs, MRI scans, PET scans, etc are not part of the USCDI standard V1 that'll be available to US patients. The current story for getting these scans still sucks and isn't close to being actually available to patients in the US. The best you can get is a set of DVD's containing that stuff, if you are lucky.

The problem is that the protocol used by imaging devices (DICOM) is ancient, and connecting with a DICOM server is a pain. There is a sort of modern standard that I've heard talked about called DICOMweb, that I think will be hooked up with FHIR and be made apart of the USCDI eventually (probably). But we still aren't very close to being able to see X-rays on our phones.

Also, one funny anecdote I've heard from working in this space is that some doctors do not like the Clinical Notes story (https://build.fhir.org/ig/HL7/US-Core/clinical-notes.html) since it means that their personal notes about their patients will be made available directly to the patient, something that was not possible in the past. Doctors often write down their real thoughts about the patient in there and can say some things the patient might not be happy with.