States Face Pressure to Modernize Race and Ethnicity Data Collection Before Federal Deadline

A new advocacy toolkit released by the Data Equity Coalition is urging states to update how they collect race and ethnicity data before new federal standards take full effect later this decade. Supporters say the changes could improve health care services, strengthen public health research, and help communities of color become more visible in government data systems.

The “Data Equity Coalition State Advocacy to Align with SPD 15 Toolkit” focuses on updated federal guidance known as Statistical Policy Directive No. 15, or SPD 15. The policy sets standards for how race and ethnicity information is collected across federal agencies, including in health care, census surveys, and public programs. The Office of Management and Budget first created the standards in 1977, but officials revised them in 2024 for the first time in nearly three decades.

The updated standards come as researchers and health equity advocates continue to warn that incomplete demographic data can hide serious health disparities. According to the Kaiser Family Foundation, communities of color continue to face major gaps in health outcomes, access to care, and experiences with discrimination in the medical system.

The new toolkit argues that outdated race and ethnicity categories no longer reflect the diversity of the United States. It says poor data collection can prevent policymakers and health systems from understanding which communities need resources the most.

One of the biggest changes in the revised SPD 15 standards is the move to a single combined race and ethnicity question. Under the old system, people answered separate questions for race and ethnicity. Federal officials said that format often confused respondents and limited accurate reporting. The new standards also add a Middle Eastern or North African category, often called MENA, as its own distinct group.

The toolkit explains that the new standards will also allow people to write in more detailed ethnic identities. Supporters say that change could help many groups feel better represented in government data.

“Without more granular race and ethnicity standards, it becomes increasingly challenging to measure population health,” the toolkit states.

Health researchers have long argued that better demographic data is critical to addressing health inequities. The Pew Research Center reported that race and ethnicity data helps public health officials understand how discrimination, poverty, and unequal access to care affect different populations.

The Centers for Disease Control and Prevention has also emphasized that racial and ethnic minority groups often face barriers tied to housing, education, employment, and health care access.

The toolkit highlights how demographic data shapes everyday experiences in health care. Race and ethnicity information collected during enrollment forms or doctor visits can influence care coordination, language access, workforce diversity efforts, and disease tracking.

Advocates say better data could help health systems respond more effectively to disparities such as maternal mortality rates among Black women, who continue to face significantly higher death rates related to pregnancy than White women.

Federal agencies are expected to fully align with the updated SPD 15 standards by 2029. The toolkit notes that states also need to modernize their systems so they can continue sharing accurate information with federal agencies. If states fail to update their systems, officials may need to rely on estimated or imputed data instead of self-reported information.

To help states prepare, the toolkit includes model legislation, advocacy talking points, policy guidance, and legislative calendars for all 50 states.

The effort is led by the Data Equity Coalition, which was formed in 2022 through a partnership between the National Minority Quality Forum and the Blue Cross Blue Shield Association. The coalition says the broader goal is to ensure that all communities are accurately represented in health data and public policy decisions.

Public health experts say the stakes extend far beyond paperwork or census forms. They argue that better demographic information can influence how hospitals allocate resources, where health programs are launched, and which communities receive targeted support during public health emergencies.

The toolkit closes with a message that reflects the broader health equity movement behind the SPD 15 revisions: “The goal is for people to be counted and seen.”

The full “Data Equity Coalition State Advocacy to Align with SPD 15 Toolkit” is available through the National Minority Quality Forum at https://nmqf.org/resource-library/data-equity-coalition-spd15-state-advocacy-toolkit/.