Comments from Richard Besser, MD, on the Initial Proposals
For Updating OMB's Race and Ethnicity Statistical Standards

The following comments were submitted by Richard Besser, MD, Robert Wood Johnson Foundation (RWJF) President and CEO, in response to a request from the Office of Management and Budget (OMB) on the initial proposals from the Federal Interagency Technical Working Group on Race and Ethnicity Standards (Working Group) for revising OMB's 1997 Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (SPD 15).

The Robert Wood Johnson Foundation (hereinafter “RWJF”) appreciates the opportunity to comment on the Federal Interagency Technical Working Group on Race and Ethnicity (Working Group)’s initial proposals for revising the Office of Management and Budget (OMB)’s Directive No. 15 to improve the quality and usefulness of federal race and ethnicity data. 

RWJF is committed to improving health and health equity for all in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have. Health is more than an absence of disease. It is a state of physical, mental, and emotional wellbeing. It reflects what takes place in our communities, where we live and work, where our children learn and play, and where we gather to worship. That is why RWJF focuses on identifying, illuminating, and addressing the barriers to health caused by structural racism and other forms of discrimination, including sexism, ableism, and prejudice based on sexual orientation. 

We lean on evidence to advance health equity. We cultivate leaders who work individually and collectively across sectors to address health equity. We promote policies, practices, and systems change to dismantle the structural barriers to wellbeing created by racism. We work to amplify voices to shift national conversations and attitudes about health and health equity. 

Our comments are grounded in the perspectives and expertise of our grantees, who include researchers, policy experts, advocates, and organizers such as The Leadership Conference Education Fund and their state and national coalition members, the Native Hawaiian and Pacific Islander Data Policy Lab and the Data Equity Center at UCLA, PolicyLink, the Network for Public Health Law, the National Health Law Program, and researchers at academic institutions. All have deep expertise on the importance of race and ethnicity data and data disaggregation to help make visible the lived experiences of historically excluded populations and the existence and persistence of health disparities and inequities. 

Since 2015, RWJF grants have supported deep dives into how the research field collects, analyzes, and reports racial and ethnic data within existing OMB categories and have convened experts to identify recommendations for improving existing standards. RWJF has also funded the dissemination of data for racial and ethnic groups that have been historically underrepresented in data as well as advocacy and issue briefs for state- and federal-level policy and practice changes through diverse coalitions. RWJF staff have published peer-reviewed articles, commentaries, and blog posts emphasizing the importance of racial and ethnic data disaggregation for achieving health equity.   

More recently, RWJF convened a first-of-its-kind independent National Commission to Transform Public Health Data Systems, which released a set of recommendations in October 2021 to address America’s outdated health data system. The recommendations provide a roadmap to create an equity-centered public health data infrastructure designed for nuanced data collection and disaggregation to measure and address structural racism and other disparities. The Commission was comprised of 16 diverse innovators and experts representing multiple sectors, including healthcare, community advocacy, government, business, and public health, among other sectors. 

RWJF offers the following analysis and recommendations to strengthen the Working Group’s initial proposals for updating OMB’s race and ethnicity standards. Our recommendations are outlined here and detailed below. 

I.    Understanding the importance of updating OMB’s race and ethnicity data standards

II.    Collecting race and ethnicity information using one combined question

III.    Adding “Middle Eastern or North African” (MENA) as a new minimum category

IV.     Requiring the collection of detailed race and ethnicity categories by default, using detailed checkboxes

V.       Updating  SPD 15’s terminology, definitions, and question wording 

VI.      Going further: Additional RWJF recommendations for the Working Group’s consideration 

I. Understanding the importance of updating OMB’s race and ethnicity data standards 

Health equity means that everyone has a fair and just opportunity to be as healthy as possible. A core principle of RWJF’s Culture of Health is that communities, regardless of income or geography, have the power, agency, and resources to create and implement their own solutions to the unique health issues facing them. To advance health equity, data collection must enable people the visibility, autonomy, and agency to see themselves in data. This means that historically excluded populations must be captured in how data are collected, analyzed, shared, and used. 

While race, a socially constructed concept, was historically created as a means for excluding certain individuals from rights and resources (for example, through slavery, in immigration, and regarding home ownership), it is now a critical piece of data needed to ensure that individuals’ civil rights are protected. At the same time, data collection practices must preserve the agency and autonomy of impacted communities, by acknowledging the harmful history of data extraction and over-surveillance of Black people and other communities of color and centering the perspectives and input of impacted communities regarding how data is collected, used, and shared.  

Current minimum standards for collecting and reporting race and ethnicity data place people under broad categories that mask the significant heterogeneity within those groups. Existing standards also might not adequately reflect the ways in which individuals self-identify, leading to significant undercounts and underrepresentation. These weaknesses in data collection and reporting render some populations invisible in the creation of policies, allocation of resources, design and implementation of programs, and violation of civil rights. 

Without nuanced data collection and disaggregation beyond broad racial categories, the research from which we draw policies and strive to influence better health outcomes is dramatically misinformed. Despite decades of advocacy efforts spearheaded by organizations to collect, analyze, and report racial and ethnic data in a more comprehensive and equitable way, little has changed for more than 25 years since the OMB minimum standards were last updated. RWJF commends OMB’s decision to review its standards governing the maintenance, collection, and presentation of federal data on race and ethnicity.  

II. Collecting race and ethnicity information using one combined question 

RWJF supports the Working Group’s recommendation to collect race and ethnicity information in a single question. Evidence released by the Census Bureau suggests that combining the race and ethnicity questions could yield a more accurate count of individuals who self-identify with at least one of the race and ethnicity options offered. Over the last two decades, the Census has found dramatic increases in the number of individuals self-identifying as “some other race (SOR),” now surpassing the Black or African American population as the second-largest racial group (alone or in combination). 

A growing SOR group presents a major equity problem for a variety of reasons, including the likelihood that these individuals will be excluded from tabulations that inform measures of meaningful racial disparities and the lack of comparability with other federal data sources that lack SOR as a race response option. [The Census and the American Community Survey (ACS) are the only federal data sources that include SOR as a racial group]. Census data from 2020 also revealed that many of those who selected SOR as their race group identified as being of Hispanic origin in the ethnicity question (e.g., 42.2 percent in 2020) and entered terms like “Latino” under the SOR write-in. In the 2015 National Content Test (NCT), fewer than 1 percent of individuals who self-identified as Hispanic in the combined question also selected SOR (compared to 39 percent when race and ethnicity were asked as separate questions). These findings suggest that a combined question would help to address the SOR concerns.

Importantly, Afro-Latino coalitions have expressed concerns about the proposal to combine the race and ethnicity questions into a single question format. While the NCT results suggest that a combined question would lead to an increase in the number of individuals who self-identify as both Hispanic/Latino and Black/African American (1.4 percent using the two separate questions versus 1.6 percent using the combined question), RWJF urges the Working Group to consider the following: 

A. Provide detailed subgroup checkboxes with the single question format (the NCT version that yielded the cited increase).

B. Conduct further research with community members about what instructions for answering the race/ethnicity question and what terminology for the detailed checkboxes ensure that populations like Afro-Latinos see themselves in the race and ethnicity groups listed.

C. Require that tabulations and Census and ACS reports for specific multi-ethnic/racial combinations be produced to ensure that communities like Afro-Latinos are provided with data about their community members and are not lumped into a generic “multi-ethnic/racial” or “two or more” category that has little to no meaning. Disaggregating the multi-ethnic/racial population will be particularly crucial given the recent significant increase in that population’s growth.

D. When reporting results, “Hispanic or Latino” must be referred to as an ethnicity, not a race.

E. Consider the results of testing that states have implemented to determine wording and potential detailed check box options. 

III. Adding “Middle Eastern or North African” (MENA) as a new minimum category 

RWJF supports OMB’s recommendation to include an additional “MENA” ethnic category, a population that is currently captured by the “White” race group. MENA communities have been advocating for this change for more than 30 years. Heterogeneity in outcomes within the White population is rarely explored, but research indicates that MENA individuals experience disparities in mental and physical health and in poverty levels, compared to Whites of Western European origins. Advocates have argued that MENA populations are seen as distinct from Whites and have experienced growing discrimination as a result of anti-Muslim and anti-Arab rhetoric. Without nationally representative data about the MENA population, it is impossible to measure the pervasiveness of these experiences, to track civil rights violations, and to ensure civil rights protections.  

In addition to supporting the addition of a MENA ethnic category, we urge the Working Group to consider the following: 

A. Conduct further research with community members about what instructions for answering the race/ethnicity question and what terminology for the race/ethnicity question and detailed checkboxes ensure that populations like MENA see themselves in the race groups listed.

B. Consider the results of prior research that has examined the thought process by which MENA individuals respond to race and ethnicity questions.

C. Require that tabulations and Census and ACS reports for specific multi-ethnic/racial combinations be produced to ensure that communities like MENA are provided with data about their community members and are not lumped into a generic “multi-ethnic/racial” or “two or more” category that has little to no meaning. Disaggregating the multi-ethnic/racial population will be particularly crucial given the recent significant increase in that population’s growth.

D. When reporting results, “MENA” must be referred to as an ethnicity, not a race. 

IV. Requiring the collection of detailed race and ethnicity categories by default, using detailed checkboxes 

RWJF supports the proposal to require the collection of race and ethnicity at more granular levels using detailed checkboxes. This version yielded more complete responses when used in combination with the combined race and ethnicity question in the 2015 NCT than did the open write-in option. In addition, mandatory reporting of detailed race and ethnicity categories fosters the ability for researchers to disaggregate data beyond the existing broad race and ethnicity categories, which extensive research has shown to encompass wide heterogeneity. 

Asian Americans, for instance, who account for more than 18 million people in the U.S., appear to be faring well, and sometimes are described as thriving based on analyses that aggregate the diverse population. Disaggregated data, though, show that these positive indicators of wellbeing are largely driven by the largest Asian subgroups and that many other Asian subgroups are struggling. Further, Asian Americans are one of the most economically divided racial groups in the U.S. For example, Southeast Asian Americans tend to experience far worse education, income, and health outcomes, but these needs are often invisible in existing data collection efforts. 

While RWJF supports this proposed change, we urge the Working Group to conduct more research with community members about which detailed subgroups should be listed under each racial and ethnic group. The proposed approach highlights certain ethnic subgroups based solely on population size, but evidence is lacking about whether this is the best approach. Another consideration might be whether to include subgroups that represent ethnicities for which individuals are less sure to which race or ethnicity they belong, such as people from Sudan, Somalia, or the Dominican Republic. OMB could also regularly study write-in responses to the detailed question to evaluate which subgroups should be added over time.

In addition, the proposed guidance specifies that collecting detailed race and ethnicity data would not be required if “an agency determines that the potential benefit … would not justify the additional burden to the agency and the public.” We strongly encourage the Working Group to develop guidance about what constitutes “a burden,” and, as part of that process, consider the racial or ethnic population’s perspective in gauging whether the burden outweighs the potential benefits. Without such guidance, there is a high risk that the racial or ethnic population’s perspective will not be prioritized. 

V. Updating SPD 15’s terminology, definitions, and question wording

RWJF supports the Working Group’s general recommendations to update terminologies, definitions, and question wording. We strongly encourage further research with community members to identify which specific terms to remove and which to add, what definitions to provide, and how questions should be worded.

VI.  Going further: Additional RWJF recommendations for the Working Group’s consideration

A. Allocate resources at the state and local levels. 

Updating OMB’s standards for race and ethnicity is only the first step. Implementation, uptake, and comprehension of those changes will require significant resources to yield the full potential benefits. Without adequate funding, state and local governments will struggle to meet the new standards in a timely way. RWJF recommends that the federal government allocate resources to state and local public health departments and community-based organizations to support the following activities:

1. Carry out efforts to accelerate data system modernization (e.g., interoperability across the disconnected, siloed patchwork of public health departments with varying data gathering capabilities). The lack of uniformity in recognizing and identifying key data from certain racial and ethnic subgroups led many policymakers to underestimate the full impact COVID-19 had on these communities. It also delayed or prevented vital testing, early vaccine deliveries, and other services for disproportionately affected communities.

2. Conduct community engagement to (1) educate community members about the purpose of federal, state, and local data collection efforts like the Census and ACS; (2) build trust among community members in federal, state, and local data collection efforts; and (3) prime community members about changes to the race and ethnicity question(s) to reduce potential confusion once new standards are implemented.

B. Emphasize, and in some cases clarify, that OMB race and ethnicity standards are a minimum floor and not a ceiling. 

Today, many researchers across the U.S. fail to even meet the minimum OMB requirements for race and ethnicity data. Rather than considering OMB’s guidance as minimum standards to uphold, too often researchers and institutions view OMB requirements as “all we need to do,” versus the “least we need to do.” It is imperative to emphasize that the OMB data collection standards on race and ethnicity set a minimum floor, and to encourage government agencies and researchers to go beyond the minimum. 

C. Establish and apply accountability measures for when state and local health departments fail to meet the OMB’s minimum standards. 

For example, six months into the COVID-19 pandemic, only 20 states were reporting disaggregated COVID data for Native Hawaiians and Pacific Islanders (NHPIs). Of the 30 states that failed to do so, eight states aggregated NHPIs with Asians, and 16 states did not report data for NHPIs at all. Failure to meet minimum standards like this should never be considered acceptable, as they inhibited the ability of state and local authorities to conduct much-needed outreach and largely made the needs of and impacts on the  NHPI community invisible during the pandemic. 

D. Conduct ongoing research. 

OMB should conduct ongoing research into the response to these changes to identify successes and challenges. This research should include analysis of the quality of data (e.g., How many people respond to the question? How many select multiple races? How many write in “other”? Are there common write-in responses that should be added?) as well as ongoing community feedback and input. The way that people understand race and ethnicity changes over time. Ongoing research into the responses to these new questions will help determine if future changes are necessary and whether further public education and outreach is needed. 

Thank you for the opportunity to comment on the initial proposals from the Federal Interagency Technical Working Group on Race and Ethnicity Standards. We have included numerous citations to support RWJF’s recommendations. We encourage the Working Group to review our cited materials linked throughout our comment letter. We request that the full text of each of the studies and articles cited, along with the full text of our comment, be considered part of the formal administrative record. If the Working Group is not planning to consider these materials as part of the record as we have requested here, we ask that you notify us and provide us an opportunity to submit copies of the studies and articles into the record. 

We look forward to continuing to work with OMB and other partners to build equity-centered standards for gathering and reporting federal data on race and ethnicity to address the United States’ growing health disparities and build stronger, more resilient communities.

About the Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation (RWJF) is committed to improving health and health equity in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.