Blog & News
Considerations from SHADAC: Proposed Revisions to Federal Standards for Collecting Race/Ethnicity DataMarch 23, 2023:
On January 26, 2023, the Interagency Technical Working Group on Race and Ethnicity Standards released an initial set of recommended revisions to the Office of Management and Budget’s (OMB) Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (SPD 15). SHADAC summarized the proposed revisions to the OMB standards in a recent State Health & Value Strategies Expert Perspective.
The public was invited to provide comment on the proposed revisions, and below, we provide text from the feedback that SHADAC submitted to Dr. Karin Orvis, Chief Statistician of the United States, in response to these revisions. We encourage other interested parties to also submit their comments, especially those who can provide state-level perspectives such as state data analysts and policymakers.
Response from SHADAC
The State Health Access Data Assistance Center (SHADAC) is a health policy research center within the University of Minnesota School of Public Health. We provide technical assistance (TA) to states in the areas of data use and analysis to support policy. The below comments are based on SHADAC’s specific experience supporting states as they address challenges related to the collection of data on race, ethnicity, language, disability, sexual orientation, and gender identity via the Medicaid application.
SHADAC was thrilled to see the revised OMB standards related to the collection of race and ethnicity. The proposed revisions align with available evidence, are consistent with the changes made by leading states, and most importantly, explicitly state that these standards should serve as a minimum baseline with a call to collect and provide more granular data. However, while these standards are specifically named as minimum reporting categories for data collection throughout the Federal Government, if adopted, they are likely to shape data collection and reporting across all sectors, including the states with whom we work that collect race/ethnicity data through the Medicaid application process.
State Medicaid programs have the flexibility to develop their own applications and race and ethnicity questions as long as they meet CMS-established reporting requirements (which follow current OMB guidance). Although many states follow the application model that CMS developed in 2013, our research has found 65 different variations in how these data are collected across all states and modes (e.g., paper, online). Once collected, this information is used in a wide variety of ways: to support state analysis and operation; in reporting to CMS; and to feed into the T-MSIS, which in turn is released as the research-ready T-MSIS data files used by researchers studying Medicaid program health outcomes, health equity, and administrative accountability.
Given the role OMB standards play in shaping state data collection approaches and the obvious impact and reach of these data, we respectfully submit our comments aimed at supporting the adoption of a revised set of standards.
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. 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.
Better Health through Data: Improved Collection of Demographic Data in Medicaid
SHADAC Deputy Director Elizabeth Lukanen served as an expert panelist for an Alliance for Health Policy briefing hosted by Arnold Ventures titled "Better Health through Data: Opportunities and Limitations of Health Data" which was held virtually on October 6, 2022. This event reviewed the importance and use of health data in addressing health disparities, the main barriers that persist in limitations to health data, and policy levers that can improve health data collection and utilization at the federal level including changes to data standards and systems, incentives and requirements, education and technical assistance, and regulation.
Elizabeth's presentation specifically focused on Medicaid Administrative Data and how SHADAC has been working to evaluate activities aimed at improving response rates and enhancing the quality of these data at the state level. She also highlights efforts by a few states – Oregon, New York, and Maryland – that have done a lot of work to fill gaps in their demographic data collection of Medicaid enrollees.
Visit the Alliance for Health Policy event page for further details, resources provided by the panelists, and a recording of this event.
Related resources supported by State Health and Value Strategies (SHVS):
- Issue Brief - Collection of Race, Ethnicity, Language (REL) Data in Medicaid Applications: A 50-state Review of the Current Landscape
- Issue Brief - Collection of Sexual Orientation and Gender Identity (SOGI) Data: Considerations for Medicaid and Spotlight on Oregon
- Expert Perspective - Exploring Strategies to Fill Gaps in Medicaid Race, Ethnicity, and Language Data
- Expert Perspective - New York State of Health Pilot Yields Increased Race and Ethnicity Question Response Rates