[ethanbond]

It’s weird you mention fragmentation and regulation as the culprits when it’s pretty obviously consolidation (to Epic and Cerner) that led to this and it’s regulation (like 21st Century Cures Act) that’s actually undoing it… by requiring that consolidated players can’t disrupt fragmentation efforts (via FHIR).

[circlemaker]

Please expand on that a bit

[ethanbond]

At least in the US, basically Epic and Cerner took over the EHR market and took effective ownership of all medical records and actively prevented care providers, patients, and researchers from easy access to those records (including for migrations to a competitive EHR — basically impossible).

Two pieces of legislation and guidance in 2016 and 2020 basically required that any EHR has to allow providers and patients to pull their records, which at first Epic was like “okay go for it, but the data model of those records is proprietary.” The government had to issue additional guidance that records must be exportable via a standard interface (e.g. HL7 FHIR), which extricates the records from any of the EHR’s internal data model.

The pre-FHIR/pre-21st Century Cures Act was pretty horrible for America’s biomedical research posture: it simply isn’t capable of doing the sort of national-scale research that e.g. the NHS system can do, which is especially valuable for understanding things like COVID and for doing research on any treatments/vaccines being used in the wild.

During COVID it became clear lot of Americans have this implicit idea that there’s a way for researchers to just “look at what’s going on” in the wild and there literally isn’t. It just recently went from effectively impossible (due to consolidation of EHR records and affiliated commercial interests locking them down) to now just very hard (due to privacy, data quality, data harmonization, and still commercial interests). That change happened via regulation and will open the door to fragmentation (while maintaining interop).

[chaxor]

A key point here is that the centralization in this case is from a for-profit company.

If the records were centralized by the government, the issues that we see now would likely not be as prevalent.

There would be other talking points and issues to be sure, but the point is there are many ways to 'centralize' information, even including, ironically, the technologies that are infamous on HN that "de-centralize" information.