Ethnicity and race-related concepts, terms and value sets

Hi Sheridan,

Clean up of Ethnicity in SNOMED CT is not part of the work that CIHI is doing with Infoway at the moment. Our focus has been to support Race/Racialized Group and Indigenous Identity. As noted, CIHI do not currently have a proposed list of values for Ethnicity.

Finnie

A separation of race and ethnicity extensions in the CA Baseline profiles would be in alignment to the evolution we're seeing from the US Core profiles. US Core has the race extension(www.hl7.org/fhir/us/core/StructureDefinition-us-core-race.html) which includes a slice on extension for representing OMB Federal Collection codes for race category (e.g., American Indian or Alaska Native) and a slice for detailed race codes (e.g., Cherokee Shawnee)

US Core Ethnicity Extension(build.fhir.org/ig/HL7/US-Core-R4/StructureDefinition-us-core-ethnicity.html) was also updated to have similar slices - OMB category code (e.g., Hispanic or Latino) and a detailed ethnicity code pulled from a CDC value set (e.g., Belearic Islander).

I'm not suggesting we adopt their codes or value sets when we have our own policies and coding systems here in Canada, but it may be a approach to consider when trying to distinguish different value sets for different reporting purposes. Before we included a Race extension in the Baseline and update the ethnicity extension to remove any codes that are actually considered more appropriate for race/racialized groups , we'd want a clear consensus from the community about the value set that is: 1) expected to be used here in Canada and, 2) in alignment to the recommendations outlined in Canadian proposed standards.

Finnie - does the work with Infoway you mentioned include cleaning up existing ethnicity value sets that blend racialized group concepts with ethnicity concepts? Is this an expected concern?

Apologies: Here is the link to CIHI's Reference Data Model (CRDM) www.cihi.ca/sites/default/files/document/cihi-reference-data-model-toolkit-en.pdf

Hi Francis,

Thanks for your post. Just want to provide further info...

The CIHI document referenced on your post provides a distinction between Ethnicity and Race (please see glossary on p. 17 for description/definition). Currently, it does not provide a proposed list of values for Ethnicity but it does for Race and Indigenous Identity www.cihi.ca/sites/default/files/document/proposed-standard-for-race-based-data-en.pdf. Given that there is a distinction between Ethnicity and Race, and since the FHIR CA Core only has Ethnicity as an extension, it will likely require an extension to support Race as well.

To note, CIHI's Reference Data Model (CRDM) http://cihighway/crdm_toolkit_en.pdf provides the SNOMED CT codes for the values for Race/Racialized Group (p. 91-92) and we are currently working with Infoway to assign SNOMED CT codes for the values for Indigenous Identity (p. 67).

Hope this helps.
Finnie

Hi all, at today's Health Terminologies Community meeting, Marcy Antonio from UVic did a short presentation of ongoing and upcoming work in social determinants of health (SDOH). There were some discussion and questions about race and ethnicity coding, which I will summarise here and invite people to comment:

1. CIHI has published a set of proposed race-based and indigenous identity data collection standards in July 2020 - see page 6 in
   www.cihi.ca/en/proposed-standards-for-race-based-and-indigenous-identity-data
2. The Canadian FHIR community has published a set of Canadian FHIR Baseline Profiles (CA-Core) - see simplifier.net/CanadianFHIRBaselineProfilesCA-Core/~introduction
3. In the CA-Core Patient Profile there is an extension element for ethnicity (but not race) - see simplifier.net/canadianfhirbaselineprofilesca-core/patientprofile
4. If you look at the ethnicity extension, its mappings make references to HL7v2.PID.22 Ethnic Group and rim:Person.ethnicGroupCode
5. If you look at the CDC value sets for Ethnic Group it contains H-Hispanic or Latino, N-Not Hispanic or Latino, U-Unknown as the values - see phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.114222.4.11.6066
6. If you look at the HL7v2 table 0189 for Ethnic group is has the same value set - www.hl7.org/fhir/v2/0189/index.html
7. But if you look at the value sets listed in CA-Core there is one for EthnicityCode based on SNOMED CT codes -see simplifier.net/canadianfhirbaselineprofilesca-core/ethnicitycode

So my question to the FHIR and HTC members is - How do we reconcile between the proposed CIHI race based standards and the CA-Core, since there are overlaps? Do we just create another extension called race in the Patient Profile in CA-Core? sorry for the cross-posting

Thanks -Francis