Representing Patient Race and Ethnicity

Type	Standard / Implementation Specification	Standards Process Maturity	Implementation Maturity	Federally required	Cost	Test Tool Availability
Standard	OMB standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, Oct 30, 1997	Final	Production	Yes	Free	N/A
Standard	CDC Race and Ethnicity Code Set Version 1.2	Final	Production	Yes	Free	Yes
Standard	CDC Race and Ethnicity Code Set Version 1.0	Final	Production	Yes	Free	N/A

Limitations, Dependencies, and Preconditions for Consideration	Applicable Value Set(s) and Starter Set(s)
The CDC Developed Code Systems includes Race & Ethnicity Code System – CDCREC 1.2 and Race & Ethnicity Code System – CDCREC 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 CDC Race and Ethnicity Code Set Version 1.2 is minor update to Version 1.0 and is the current version for CDC reporting requirements. The high-level race/ethnicity categories in the OMB Standard may be suitable for some statistical or epidemiologic or public health reporting purposes but may not be adequate for other uses such as 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. LOINC is used to capture race and/or ethnicity in multiple coded panels; some of these align with the OMB race and ethnicity Category codes (e.g., 72826-1 69490-1). On March 28, 2024, OMB finalized revisions to Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (SPD 15). The 2024 revisions to SPD 15 are effective as of its publication date, and Federal agencies must comply with these updates as soon as possible, and, in any case, no later than March 28, 2029.	Race (Category): PHINVADS Race Category Excluding Nulls VSAC Race Category Excluding Nulls Race (Note, the use of “Other Race” is discourage) Race (Detailed): PHINVADS Race Value Set VSAC Race Value Set Ethnicity (Category) PHINVADS Ethnicity Group Value Set VSAC Ethnicity Ethnicity (extended set, 43 codes): PHINVADS Detailed Ethnicity Value Set VSAC Detailed Ethnicity

Limitations, Dependencies, and Preconditions for Consideration

Applicable Value Set(s) and Starter Set(s)

The CDC Developed Code Systems includes Race & Ethnicity Code System – CDCREC 1.2 and Race & Ethnicity Code System – CDCREC 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 CDC Race and Ethnicity Code Set Version 1.2 is minor update to Version 1.0 and is the current version for CDC reporting requirements.
The high-level race/ethnicity categories in the OMB Standard may be suitable for some statistical or epidemiologic or public health reporting purposes but may not be adequate for other uses such as 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. LOINC is used to capture race and/or ethnicity in multiple coded panels; some of these align with the OMB race and ethnicity Category codes (e.g., 72826-1 69490-1).
On March 28, 2024, OMB finalized revisions to Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (SPD 15). The 2024 revisions to SPD 15 are effective as of its publication date, and Federal agencies must comply with these updates as soon as possible, and, in any case, no later than March 28, 2029.

Race (Category):
- PHINVADS Race Category Excluding Nulls
- VSAC Race Category Excluding Nulls
- Race (Note, the use of “Other Race” is discourage)
Race (Detailed):
- PHINVADS Race Value Set
- VSAC Race Value Set
Ethnicity (Category)
- PHINVADS Ethnicity Group Value Set
- VSAC Ethnicity
Ethnicity (extended set, 43 codes):
- PHINVADS Detailed Ethnicity Value Set
- VSAC Detailed Ethnicity

Comment

Submitted by mbkurilo@immre… on 2023-10-06

AIRA Comments on Race and Ethnicity

AIRA would welcome and encourage ONC’s coordination and/or leadership in determining what value set should be used for “flavors of null” or “Data absent reasons” for race and ethnicity data. AIRA and other organizations can then encourage and support all systems in adopting those codes (and all work together via the ISA to expand those codes as necessary). Through our Standards and Interoperability Steering Committee (SISC), we have discussed recommending the following codes of UNK (unknown), ASKU (asked but unknown) and PHC1175 (refused to answer), but this draft attempt is not yet final due in large part to the number of groups simultaneously working to better define a standard in this area.

AIRA recognizes that we are one of many groups grappling with race and ethnicity codes currently, and we would be happy to participate in a larger process to ensure the race and ethnicity data captured is accurate, consistent, complete, and timely, so that it can be used to address health disparities and ensure equity across the public and private health care system.

Submitted by Ashley_Ashworth_OHA on 2021-09-30

Oregon Health Authority ISA Comments

Oregon has implemented standards for the collection of Race, Ethnicity, Disability, and Language (REALD). State legislation in 2013 (HB 2134) required OHA and the Oregon Department of Human Services (ODHS) to develop standards in all programs that collect, record, or report demographic data. It is critical to collect these data in a consistent and standardized manner to assess how racism impacts community and individual health. While we aim to align state standards to national standards where possible, specific to race and ethnicity, the CDC v1.0 standard is not inclusive enough and is missing two races that are collected, recorded, and reported in Oregon – Somali and Slavic. We are unclear on the pathway to recommend changes to the CDC standard and if approved the time for the standard to be updated. We encourage ONC to deploy a clear path and forum for states to use when updates to national standards for demographics data are needed.

OHA ISA Comments on letterhead_.pdf

Submitted by Spruitt on 2021-10-26

Changes to the CDC Standard on Race and Ethnicity

ONC continues to work with our federal partners on refining standards related to demographic data. This is an area that will continue to evolve over time.

Submitted by pwilson@ncpdp.org on 2018-10-01

NCPDP Comment

Reporting of race using the Centers for Disease Control (CDC) PHIN Vocabulary Access and Distribution System (VADS) is supported in the SCRIPT Standard Version 2017071.
Link: http://phinvads.cdc.gov/vads/ViewValueSet.action?id=66D34BBC-617F-DD11-B38D-00188B398520#

Submitted by cmcdonald on 2018-10-01

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).

Submitted by gdixon on 2018-09-12

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.

Submitted by kwboone on 2017-11-20