Informatics core: US genomic and healthcare standards have a common problem.

My current work means I’ve spent many hours plumbing details of major American and international health care standards, particularly FHIR, HL72, CCDA/HL73 and NCPDP. 

It reminds me of a project from the late 00s when I was exploring genomics database.

There’s too much documentation.

Specifically, there are too many information sources that are not well maintained. There’s always funding to create a repository or database or web app, there’s never funding to sustain it. All the partly implemented solutions create a misleading cloud of chaff.

One has to dig through to the core source — if it exists. The core sources for HL7 3 are, unfortunately, very hard to work with (lots of reasons for that, including the way HL7 used to be funded). FHIR core sources are easier to navigate — but already there are various extensions and fissures. Best not to mention use of the Federal Registry as a reference information source.

The structure and maintenance of knowledge sources is a core informatics problem. We need to get back to our roots in the National Library of Medicine and library science. That would require funding though…