FHIR Chat · us-core race and multiracial · implementers

Stream: implementers

Topic: us-core race and multiracial

Bob Milius (Oct 01 2020 at 17:54):

We are collecting transplant outcomes data from different organizations and part of this effort includes collecting patient demographic data. We are planning on using us-core for this, including the race extension. One transplant center records a value of "multiracial" but that is not in the valueset bound by the extension. We're looking for best practices on collecting this data.

Since the "text" element is required in the extension, we'll ask them to record "multiracial" in there, but we are reluctant to using non-structured data element for downstream analysis. Would it be reasonable to add UNK as a structured field? e.g.,

{
    "url": "http://hl7.org/fhir/us/core/StructureDefinition/us-core-race",
    "extension": [
        {
            "url": "ombCategory",
            "valueCoding": {
                "system": "http://terminology.hl7.org/CodeSystem/v3-NullFlavor",
                "code": "UNK",
                "display": "Unknown"
            }
        },
        {
            "url": "text",
            "valueString": "Multiracial"
        }
    ]
}

Has anyone else had to deal with this issue (non-specific multiracial)? How did you deal with it?

And, would it be good practice to create another extension to add "multiracial" to a valueset?

Grahame Grieve (Oct 01 2020 at 20:28):

might ask this question on #united states ? but those value sets are regulatory so additions doesn't seem likely to me. So it would be an extension, like what you have, but with a URL

Lloyd McKenzie (Oct 01 2020 at 20:44):

The extension isn't really targeted at clinical use

Joel Schneider (Oct 01 2020 at 21:15):

The data is/will be used for observational research.

It would be interesting to know if others have encountered, solved, or worked around this same issue (a non-specific "multiracial" category).

Robert McClure (Oct 03 2020 at 19:21):

@Joel Schneider It is my understanding that currently OMB (which is the start-point for the CDC code system) has specifically decided to not include a multiracial category. See:
(1) OMB accepts the following recommendations concerning reporting more than one race:
When self-identification is used, a method for reporting more than one race should be adopted.
The method for respondents to report more than one race should take the form of multiple responses to
a single question and not a "multiracial" category.
When a list of races is provided to respondents, the list should not contain a "multiracial" category.
Based on research conducted so far, two recommended forms for the instruction accompanying the multiple response question are "Mark one or more ..." and "Select one or more...."

So it seems that your source data is not compliant with regs. Assuming the actual races that the person could have selected are not known, I think your use of UNK and the text may be the best solution. @Brett Marquard @Steve Posnack

Brett Marquard (Oct 05 2020 at 13:06):

As a temporary solution, sure add an extension. Did you ask if they considered using the values required by all EHRs?

Last updated: Apr 12 2022 at 19:14 UTC