Proposed Changes to Federal Standards for Collecting Race and Ethnicity – Summary and Considerations
Elizabeth Lukanen and Emily Zylla, SHADAC
Individual-level data on race and ethnicity are foundational to identifying and addressing health disparities and to continue to shine a light on the systemic racism that contributes to these inequities. Specifically, the race and ethnicity data collected by the Medicaid program plays a major role shaping policy and operational changes aimed at enhancing equity in coverage, access, and outcomes among historically marginalized and underserved populations. For this reason, the quality, completeness, and granularity of these data are critical.
Medicaid agencies and most U.S. territories collect self-reported data on race and ethnicity from applicants during the eligibility and enrollment process through an optional question, and there is significant variation in how the data are collected and their quality. The U.S. Department of Health and Human Services (HHS) provides guidance, but does not mandate, that states use federal data collection standards when collecting race and ethnicity from Medicaid applicants. These standards were developed by the U.S. Office of Management and Budget (OMB) in 1977 and revised in 1997 (1997 Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity [SPD 15]).
Data collection within the Medicaid program and in other state agencies is greatly influenced by this federal guidance, and there has long been a call to improve the collection standards and, ultimately, the quality of race and ethnicity data. In June 2022, OMB initiated a process to review and revise SPD 15 for the first time since 1997. The administration convened the Federal Interagency Technical Working Group on Race and Ethnicity Standards (Working Group), and in February 2023, the Chief Statistician of the United States released an initial set of recommended revisions to the 1997 standards. The comment period on the proposed revisions has been extended until April 27 to allow additional time for the public to review and submit comments. The revised standards are expected to be completed by summer 2024.
Revisions to OMB Directive No. 15
Proposed by the Federal Interagency Technical Working Group on Race and Ethnicity Standards (Working Group) for revising OMB’s Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity.
The proposed revisions to the standards (Figure 1) are fairly straightforward and include four primary components:
- Using a single, combined question for the collection of race and ethnicity information
- The use of separate race and ethnicity questions confuses many respondents
- Employing a new combined question design may take significant time and resources for some surveys and information collections to implement
- Flexibilities should be allowed for agencies dependent on aggregate data, data that are not self-reported, or data from non-federal providers
- Including “Middle Eastern and North African (MENA)”as a new minimum response option
- Add Middle Eastern or North African as a distinct category
- Edit the current definition of “White” reporting category to remove MENA from the definition
- Require the collection of detailed race and ethnicity categories by default
- Require data collection on race and ethnicity for the six most common countries of origin within each of the seven main categories (except for American Indian or Alaska Native)
- Provide an open text response option for each category
- In any circumstance, agencies are encouraged to collect and provide more granular data than the minimum categories
- Remove outdated/offensive terminology:
- ‘‘Negro’’ from the Black or African American definition
- ‘‘Far East’’ from the Asian definition, replacing with ‘‘East Asian’’
- ‘‘Other’’ from ‘‘Native Hawaiian and Other Pacific Islander’’
- The phrase ‘‘who maintain tribal affiliation or community attachment’’ in the American Indian or Alaska Native definition
- Discontinue use of the terms “majority” and “minority”
- If a combined question is adopted, the question stem should use “race” and “ethnicity,” i.e., “what is your race or ethnicity”
- Update instructions to “Mark all that apply” and “Select all that apply”
Figure 1: Proposed Example for Self-Response Data Collection – Combined Question with Minimum Categories
In addition to the four primary revisions to the minimum collection standards, the Working Group offered additional revised implementation guidance:
- Due dates agencies must meet as they incorporate revisions to information collections
- Statistical methods to connect data produced from previous and revised collection formats (e.g., bridging between data collected via two questions without MENA and data collected via one question with MENA)
- Procedures for collecting, processing, and reporting detailed racial and ethnic categories
- Approaches for collecting race and ethnicity information when self-identification is not possible, i.e., data collected by a proxy or observation and/or by entities outside of SPD 15’s purview (e.g., state or local governments, hospitals, or schools)
- Approaches for reporting data for respondents who select more than one race or ethnicity
- Best practices for agencies to rely on when communicating SPD 15 revisions to stakeholders
Comments and Considerations
The State Health Access Data Assistance Center (SHADAC) strongly suggests that state stakeholders review and provide comments on these revisions. If adopted, we believe that these standards are likely to shape data collection and reporting across all sectors, including the states with whom we work that collect these data through the Medicaid application process. To inform this, we offer our comments and considerations related to the revisions.
We believe that the proposed revisions align with available evidence and are consistent with the changes made to race/ethnicity data collection by leading states. We also support the more explicit clarity that these standards should serve as a minimum, with guidance to collect and provide more granular data than the minimum categories. As these revisions are considered, we would offer four points of comment.
Cross Program and Agency Alignment
Guidance needs to include detail on how any revisions will filter through data collection and reporting across all sectors that impact states/federal interactions. Will all federal agencies adopt the proposed new standards on the same timeline?
For example, all Food and Nutrition Services (FNS) state agencies are currently required to collect race and ethnicity according to prescribed specifications: race and ethnicity must be collected using a two-question format (ethnicity must be collected before race), and the minimum categories must align with OMB standards. Therefore, states with a combined Medicaid/SNAP application currently cannot offer a combined race/ethnicity question even though the most current evidence shows that is the preferred approach. States will want to know whether the adoption of the new proposed OMB standard allowing for a combined race/ethnicity question will supersede the existing FNS guidance on how to collect this information. Or will states that want to pursue a combined question on their combined Medicaid/SNAP application have to wait for updated FNS guidance to be released?
Similarly, existing guidance requires states to share data (including demographic data like race and ethnicity) with health plan carriers via a federally standardized 834 template. States cannot make changes to existing data fields on this form—any changes made currently result in enrollment transaction failures. If OMB standards are updated, how and when will changes be made to the 834 file form to align with these new changes?
Finally, the revisions have implications for state data reporting of race and ethnicity into the Transformed Medicaid Statistical Information System (T-MSIS). If approved, states will need guidance on how to transition to a single data element (combined race and ethnicity). They will need to understand how to streamline or roll-up more granular data and more write-in data and how to manage the likely increase in people who report more than one race.
The revised guidance rightfully acknowledges the challenges associated with collecting more granular data. If the final guidance recommends the inclusion of an open text response option for each detailed category, states will need detailed, individual guidance on how best to manage those data. While most states prioritize granularity, they simply don’t have the staff time or, in some cases, the expertise to develop the thoughtful and detailed cleaning and coding procedures required to process a large volume of write-in data. In addition, many current IT systems don’t have the functionality to collect and store a large volume of write-in data.
One way to support this would be to develop or enhance an existing hierarchy that includes a long and diverse list of racial and ethnic categories, such as the Centers for Disease Control Race Category and Ethnicity Groupings. Another way to support the use and reporting of disaggregated data is to provide technical support and guidance around data use standards. This could include standards around recency, maximum “refusal to answer” thresholds, data missingness thresholds, and sample size thresholds that guide suppression of publication.
States need direct technical assistance (TA) to support the successful implementation of revised standards. This will need to go beyond documentation and guidance. To do this well, states should have access to experts who can provide practical, hands-on advice that is responsive to their specific needs. The type of assistance needed will vary. States with sophisticated analytic teams may seek advice on how to bridge race and ethnicity data collected under one method with data collected under a revised method. Other states may need more fundamental support to implement the expanded race/ethnicity option in a way that is the least disruptive to their current data collection structure.
We would also recommend that any TA effort include a forum for states to discuss implementation challenges with their peers and serve as a repository for promising practices. States will face different challenges but always appreciate having a forum to discuss problems and solutions with other state officials. In addition, there is limited research on best ways to collect data on race and ethnicity and even less on operational considerations for collecting this information in an administrative context like a Medicaid application. Technical assistance should encourage and support the evaluation of systems’ improvements and serve as a clearinghouse for sharing key findings.
To build trust with the enrollees from whom this data is being collected, states would also benefit from technical assistance or model training materials on the best ways to communicate why this data is being collected and how it is being used (e.g., TA on effective forms of community engagement, Navigator or assister training, or instructional language scripts for frontline workers.)
Questions that collect race and ethnicity data within the Medicaid application are embedded in many other complex and multifaceted questions about topics such as employment, income, household composition, etc. The systems that collect and house this information vary in their age, technical capacity, and purpose. Almost uniformly, they are complex and expensive to change, both in terms of data collection but also data transfer, reporting, and sharing. Ideally, states can access new dedicated funding or receive clear guidance on how existing federal money can be used to make necessary IT and systems changes.
The funding associated with this effort should also be flexible. It should support direct costs like system modifications but also priorities such as stakeholder engagement, instructional language development, and training—all of which are critical to successfully implementing the revised data collection guidance.
Urgency of Additional Guidance
While we are encouraged to see revised standards related to race and ethnicity data collection, we want to stress the urgency of revised guidance related to data collection on sexual orientation, gender identity, primary language, and disability. The current standards on sex are woefully inadequate, to the point of causing harm to people who identify as belonging to a sexual or gender minority population. Standards around disability and language are similarly lacking. Given the intersectionality of these concepts as they relate to identity, it’s important to make progress on updating standards for all areas, not just one. (Ultram) In addition, if states are to make significant investments to modify application wording as well as data systems and reporting structures to improve the collation of race and ethnicity, it makes sense to do this with the knowledge and understanding of timing for future changes regarding sexual orientation, gender identity, primary language, and disability. At the best, these timelines could be aligned, and at the least, states should have visibility to when those revisions are likely to be released.