Follow-up Guidance on Race/Ethnicity Data Collection and Coding Support

Key strategies and concepts for aligning with updated federal and state guidelines

Read our updated memo regarding the new federal administration here:

Overview of Recommendations

In 2024, the US Office of Management and Budget (OMB) presented recommendations from their working group to update the 1997 standards for collection of data on race and ethnicity. Major recommendations of this group include using a single question to collect race and ethnicity, adding a category for Middle Eastern/North African (MENA), and the collection of detailed race and ethnicity as the standard. While data collection practices may vary, MSHIELD recommends coding and submitting the data under the same broad categories for a combined race/ethnicity question that were recently released by OMB; a similar update has been proposed by the Michigan Department of Health and Human Services. This will facilitate a uniform approach to race/ethnicity and allow future stratification of quality measures by race/ethnicity across hospitals and CQIs.

Key Resources

“U.S. Office of Management and Budget's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity” The Office of Management and Budget (OMB). https://spd15revision.gov/

“Race and Ethnicity Data Collection Standards.” Michigan Department of Health & Human Services.  https://www.michigan.gov/mdhhs/keep-mi-healthy/multihealth/race-and-ethnicity-data-collection-standards

Data Collection

The MSHIELD Guide, Collecting Demographic Data: Best Practices for collecting race, ethnicity, language, sexual orientation, gender identity, and disability data emphasizes the importance of patient self-report/self-identification for collection of race/ethnicity data. Hospital staff and data abstractors should not make assumptions about patient identification to satisfy administrative requirements.

Hospitals should collect data on race/ethnicity using a single question and, at a minimum, include the following categories, to correspond with OMB and MDHHS guidelines:

MSHIELD, state, and federal guidance all recommend a multiple-categories “Select all that apply” approach to asking the race/ethnicity question. The intention of these policies is to better capture people’s self-identified race/ethnicity categories but may not fully capture people who primarily identify as “multi-racial”. MSHIELD plans to develop additional best practices on data collection for this important area in the future.

Note: some of the wording for race and ethnicity categories has been updated from earlier MSHIELD recommendations to match the final OMB guidance.

While the OMB guidance does not require additional categories for “unknown” or “other”, we recommend including “prefer to self-identify” and “prefer not to answer” as best practices in patient questionnaires and MDHHS provides similar guidance. MSHIELD does not recommend including the language “unknown” or “other” in a patient-facing questionnaire, but hospital staff could enter “Unknown/Race or Ethnicity Not Asked” when they were unable to ask the patient to self-identify.

Hospitals and CQIs can continue to collect more detailed race/ethnicity information to meet the needs of their patient populations; OMB offers suggested categories for more detailed information (Figure 1). These can later be rolled up into the broad categories recommended for data coding and submission.

Data Coding/Reporting

For coding and reporting of data, hospitals and CQIs should submit race/ethnicity data under these broad categories:

** While the OMB guidance does not explicitly require this, MSHIELD recommends an additional “Unknown” category for data coding/submission that can include “Prefer Not to Answer” responses to the questionnaire, as well as any other reason for missing data.

For more detailed race/ethnicity information that hospitals and CQIs may end up collecting, including in the “Prefer to self-describe” write-in field, MSHIELD recommends considering a cross-walk between write-in responses and the broad race and ethnicity categories above. 

Because the OMB guidelines allow for multiple selection, storage systems for the data need to include multiple fields—at least one for each of the above race/ethnicity categories and one for “Unknown” which can include refused or missing responses to patient questionnaires.

Contact our team member for more information:

MSHIELD Health Informatics Specialist

E: kirchm@med.umich.edu

P: 734-764-9864