Data used to categorize individuals for identification, records matching, and other purposes.

Data Element
Race

Applicable Vocabulary Standard(s)

Applicable Standards

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.0 (March 2000)

Adopted at 45 CFR 170.207(f)

Comment

Submitted by dataequitycoalition on

Data Equity Coalition: Race Data Element for USCDI V7

Recommendation: The Data Equity Coalition recommends that ASTP update the current race and ethnicity data elements to align with the 2024 revised Office of Management and Budget (OMB) Statistical Policy Directive No. 15 (SPD 15) standards for the collection and use of race and ethnicity data. We recommend that ASTP consolidate the current race and ethnicity data elements into a single data element, aligning with SPD 15. 

Rationale: Persistent disparities in health outcomes, particularly among historically underserved communities, are exacerbated by outdated and incomplete data collection practices. Standardizing these elements across federal health programs, health IT systems, and value-based care models is foundational to identifying disparities, mitigating bias in emerging technologies, and advancing health equity. Incorporating the updated OMB SPD 15 categories into the USCDI will promote consistency across the ecosystem and support HHS’s broader goals in prevention, wellness, and chronic disease management.

Submitted by NCQA on

NCQA recommendation for Race and Ethnicity

Recommendation: Update the Race and Ethnicity data elements to align with the OMB revisions to the Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (SPD 15), published on March 29, 2024. First, in alignment with the revised SPD 15, we recommend ASTP combine the individual race and ethnicity elements to create one data element: Race and/or Ethnicity. Second, we recommend ASTP update the vocabulary standards for the Race and/or Ethnicity data element to reference the March 2024 revised SPD 15.  

Rationale: NCQA supports ASTP’s stated plans to modify the existing Race and Ethnicity elements and terminology requirements to support implementation of the updated OMB SPD 15 standard in future USCDI versions. We recommend USCDI update to align as early as possible (well in advance of the March 2029 OMB deadline) to support clear requirements and alignment of standards across the industry. 

Submitted by ufbfung on

Please align with the new OMB regulations

Please align with the new OMB regulations that were just released: https://www.federalregister.gov/documents/2024/03/29/2024-06469/revisions-to-ombs-statistical-policy-directive-no-15-standards-for-maintaining-collecting-and. There is a conflict between guidance from USCDI, and notably, US CORE, and it'd be great to have alignment between the new, very welcomed, OMB regulations and the various artifacts (e.g. USCDI and US CORE) that are shaping our FHIR implementations. 

Submitted by rmcclure on

Please align with OMB regulations

OMB has published updated regulations to combine Race and Ethnicity into one question. In doing so they elevate the existing Middle Eastern or North African (MENA) concept as a "top level" reporting category, but they also remove the distinction between "race" and "ethnicity" while allowing for the collection of prior top-level categories from both. I strongly encourage ONC to align with this intent and combine race and ethnicity into one data element. Note that existing models and data are easily aligned with this proposed improvement.

Submitted by Janice on

combined race and ethnicity

OMB recently finalized a proposal made about a year ago that combines race and ethnicity into a single concept, adds Middle Eastern and North African as a new major category, and offers the option to provide a more detailed ethnicity than currently captured among other changes. By the time USCDI v5 is likely to be used in regulation those changes will be several years along and likely starting to be absorbed/used in the real world. We suggest ONC consider whether it makes sense to adopt those changes in USCDI v5 or, if not, to at least consider a plan for how it will move to support those changes in the future.

Submitted by nedragarrett_CDC on

CDC's Consolidated Comment for USCDI v4

  • Recommend updating the applicable standards language with the following: “At a minimum, the Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997, must be used. If needed, a detailed list of race and ethnicity categories must be captured using the CDC detailed Race and Ethnicity code system (CDCREC). The CDCREC detailed concepts are an expansion of and roll-up to the OMB minimum race and ethnicity categories. “
  • Comment from CSTE: CSTE agrees with CDC's recommendation to align with CDC Race and Ethnicity Code System (see: PHIN VADS). Regarding implementation, if EHRs cannot display all coded values, they should have a mechanism to convert data into coded values in a way that meets jurisdictional reporting requirements. Additional revision may be necessary as OMB revises Statistical Policy Directive 15 (Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity).

Submitted by cmayo@med.umich.edu on

AAPM - OORO Support for Patient Reported Race

The AAPM Operational Ontology for Radiation Oncology ( https://aapmbdsc.azurewebsites.net) noted several systems for identifying Patient Reported Race .  HL7 Reference system was recommended as the primary system. https://www.hl7.org/fhir/v3/Race/cs.html

Note that OORO named the element Patient Reported Race rather than Race, to emphasize that this characterization of the patient should be selected by the patient, not a second party. Patients note that the value selected for them by a provider can be  incorrect.

Submitted by nedragarrett_CDC on

CDC's comment on behalf of ASTHO (WA DOH)

Subject: Additional values in the valueset

  • Comments: Meeting the needs of different racial groups, many race groups are categorized by country specifically but some race groups have origin in a certain country/region but the current generations now live in multiple countries due to different reasons. Accurate identification of these groups will help attain health equity based on the unique needs of the racial groups.

New Race values proposed for addition to the value set with code as ‘PHVS_Race_CDC’ and valueset name as ‘Race Value Set’ is as follows:

  • Afro-Carribean
  • Cham
  • Chicano/a or Chicanx
  • Congolese
  • Cuban
  • Eritrean
  • First Nations
  • Indigenous-Latino/a or Indigenous-Latinx
  • Jordanian
  • Karen
  • Kenyan
  • Kuwaiti
  • Mestizo
  • Mien
  • Moroccan
  • Oromo
  • Puerto Rican
  • Romanian/Rumanian
  • Russian
  • Saudi Arabian
  • Somali
  • South African
  • Ugandan
  • Ukranian
  • Yemeni
  • Patient declined to respond/Asked but unknown
  • Unknown

Submitted by ravi.kafle@doh… on

Additional values in the value set

Meeting the needs of different racial groups, many race groups are categorized by country specifically but some race groups have origin in a certain country/region but the current generations now live in multiple countries due to different reasons. Accurate identification of these groups will help attain health equity based on the unique needs of the racial groups.

New Race values proposed for addition to the value set with code as ‘PHVS_Race_CDC’ and valueset name as ‘Race Value Set’ is as follows:

 

  • Afro-Carribean
  • Cham
  • Chicano/a or Chicanx
  • Congolese
  • Cuban
  • Eritrean
  • First Nations
  • Indigenous-Latino/a or Indigenous-Latinx
  • Jordanian
  • Karen
  • Kenyan
  • Kuwaiti
  • Mestizo
  • Mien
  • Moroccan
  • Oromo
  • Puerto Rican
  • Romanian/Rumanian
  • Russian
  • Saudi Arabian
  • Somali
  • South African
  • Ugandan
  • Ukranian
  • Yemeni
  • Patient declined to respond/Asked but unknown
  • Unknown

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