Stream: implementers
Topic: US Core Value Sets Download?
Abbie Watson (Oct 11 2017 at 12:53):
Has anyone made available a download of the US Core value sets? I'd be happy with either JSON or XML.
http://hl7.org/fhir/us/core/2017Jan/valuesets.html
It's simple enough to find the definitions of what's in US Core; and to see it all listed out. I'm just wondering if they're available as a download somewhere. Maybe as a resource in a server implementation somewhere?
Eric Haas (Oct 11 2017 at 13:06):
see the downloads page... http://hl7.org/fhir/us/core/downloads.html
the definitions files contain all the us core value-sets
Abbie Watson (Oct 11 2017 at 14:54):
Thank you much! That's exactly what I was looking for! :)
Abbie Watson (Oct 11 2017 at 15:07):
Damn, this US-Core Implementation Guide is all sorts of screwed up. Not saying that HL7 or the FHIR working groups have done anything wrong. Just that the US federal government healthcare reporting requirements are based on super antiquated pre-genomic thinking.
Josh Mandel (Oct 11 2017 at 15:40):
@Abigail Watson can you include some specifics here?
Abbie Watson (Oct 11 2017 at 16:56):
Well… from a genetics perspective, the us-core-race, us-core-ethnicity, and us-core-birthsex value sets are all pretty sketchy. Coding things up as White/Black? Hispanic/Non-Hispanic? That’s not grounded in science or medicine; and definitely not genetics. That’s politics right there. From before the Human Genome Project was conducted and GINA was passed. And I’m not even going to get into intersex conditions and the lack of karyotype testing and infant intersex medical interventions.
The more I look at these downloads though, I’m not seeing the value set expansions coded up in XML or JSON. Just the schematrons. Bummer. Guess I’ll have to implement them by hand.
Also, I'm mostly criticizing what's listed in the ValueSet Expansions. I'm aware the Resources themselves support multiple value sets. I'm of the opinion that we need to implement a US-GINA Implementation Guide, with associated us-gina-* valuesets.
Eric Haas (Oct 11 2017 at 18:22):
the value sets definition are here.
pasted image
Eric Haas (Oct 11 2017 at 18:24):
They are based upon US Regs not genetics so I would not expect them to be the same thing
Abbie Watson (Oct 11 2017 at 18:41):
Ah, very good! Found what I was looking for. Sort of buried at the end of the files. Thank you again! :)
Lloyd McKenzie (Oct 11 2017 at 23:04):
None of those extensions have anything to do with genetics - they're all for administrative/regulatory reporting purposes - and aren't expected to have clinical value. If you want clinically "useful" race/ethnicity/gender information, look to Observation.
Lloyd McKenzie (Oct 11 2017 at 23:04):
(That doesn't mean that lots of people won't appropriate the administrative elements for clinical purposes - because that's often what they have. But it does mean we can't really complain that they aren't fit for purpose when we're using them for a purpose they weren't intended for.)
Last updated: Apr 12 2022 at 19:14 UTC
