Representing Patient Race and Ethnicity

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Type Standard / Implementation Specification Standards Process Maturity Implementation Maturity Adoption Level Federally required Cost Test Tool Availability
Standard
Final
Production
Rating 4
Yes
Free
N/A
Standard
Final
Production
Feedback Requested
Yes
Free
N/A
Limitations, Dependencies, and Preconditions for Consideration Applicable Value Set(s) and Starter Set(s)
  • The CDC Race and Ethnicity Code Set Version 1.0, which expands upon and can be rolled up to the OMB standards may help to further define race and ethnicity for this interoperability need as it allows for multiple races and ethnicities to be chosen for the same patient.

  • The high-level race/ethnicity categories in the OMB Standard may be suitable for statistical or epidemiologic or public health reporting purposes but may not be adequate in the pursuit of precision medicine and enhancing therapy or clinical decisions.

  • LOINC® provides observation codes for use in the observation / observation value pattern for communicating race and ethnicity.

  • The LOINC answers for Race look similar to CDC/HL70005, but don’t match; this may be confusing to implementers.
  • When clinically significant, the patient's "race" or “ethnicity” should be managed using an "Ask on Order Entry" question (AOE). This process is defined in the eDOS Implementation Guide developed through the ONC Standards & Interoperability Framework, and is designed work in conjunction with the LOI Implementation Guide, also developed through the ONC S&I Framework. For example, Glomerular Filtration Rate, Estimated (eGFR) results reference ranges vary based on race.
  • Race (5 codes): Race Category Excluding Nulls urn:oid:2.16.840.1.113883.3.2074.1.1.3
  • Race (extended set, 900+codes): Race urn:oid:2.16.840.1.113883.1.11.14914
  • Ethnicity: Ethnicity urn:oid:2.16.840.1.114222.4.11.837
  • Ethnicity (extended set, 43 codes):  Detailed Ethnicity urn:oid:2.16.840.1.114222.4.11.877

Comment

What Use Case Does LOINC Support?

What use case does LOINC support that is not currently supportable with existing implementations?  We are concerned about adding additional complexity for implementing an additional value set that does not align.

Difficult to know what the…

Difficult to know what the CDC specification is: I could find no enumeration of the possible codes in the proposal. This makes it hard to know what is intended and why. Something clearer should be produced before asking respondent to comment. The current OMB is clear regarding the top 5 and the extension The proposal has a lot of content regarding options for entering more than one race (but thought that capability was available in current race specification).