Patient Demographics/Information

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).

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.

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

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