A new national push to improve how race and ethnicity data are collected is gaining momentum, as health leaders warn that outdated systems continue to obscure the needs of communities of color.

At the center of the effort is a newly released state advocacy toolkit from the Data Equity Coalition, a partnership between the National Minority Quality Forum and Blue Cross Blue Shield Association. The toolkit is designed to help states align with updated federal standards known as Statistical Policy Directive 15, or SPD 15, which were revised in 2024 for the first time in nearly three decades.

Health equity experts say the stakes are high. Without accurate and detailed data, policymakers and providers struggle to understand who is being left behind in the healthcare system. “If you’re not seen in the data, then you’re not really being considered in all of the solutions,” said Aishat Magbade, who works in legislative and regulatory policy and community health policy at the Blue Cross Blue Shield Association, during a recent discussion about the initiative .

The conversation, led by Adjoa Kyerematen, Vice President of Communications and Public Affairs at the National Minority Quality Forum, highlighted how the new toolkit aims to turn years of research and advocacy into action at the state level.

Why better data could reshape health outcomes

The revised SPD 15 standards are designed to address long-standing gaps in how race and ethnicity data are collected. They introduce a single combined question for race and ethnicity, expand categories, and allow people to select multiple identities or write in their background. One major change is the addition of a Middle Eastern or North African category, which had previously been grouped under “White,” limiting visibility for those populations .

Public health researchers have long argued that these limitations contribute to disparities. According to the Centers for Disease Control and Prevention, racial and ethnic minorities continue to experience higher rates of chronic disease, lower access to care, and worse health outcomes compared to White populations. Experts say better data is essential to closing those gaps.

The new federal standards aim to give a clearer picture of who lives in the United States and how different communities experience health and healthcare. By collecting more detailed information, health systems can identify patterns that were previously hidden.

The Data Equity Coalition toolkit emphasizes that data disaggregation, or breaking down large datasets into smaller groups, is key to revealing disparities. Without it, major differences in care and outcomes can remain invisible . For example, broad categories like “Asian” can mask important differences between subgroups such as Filipino, Vietnamese, or Indian communities.

“This allows people to actually really pinpoint who they are and allows them to be seen in the data,” Magbade said, noting that the changes support more accurate self-identification and better tracking of disparities .

The impact goes beyond research. Healthcare providers rely on demographic data to design programs, allocate resources, and deliver culturally appropriate care. When data is incomplete, services may not reach the people who need them most. The toolkit notes that improved data collection can help organizations build more responsive systems and tailor interventions to specific communities .

Federal agencies are required to fully adopt the updated standards by 2029, giving states a limited window to act. A recent extension moved key planning deadlines to 2027, but advocates say the timeline still requires urgent action .

That is where the toolkit comes in. It provides model legislation, policy language, and community messaging to help states update their data systems. It also offers guidance for engaging lawmakers and educating the public about why these changes matter.

Advocates say state alignment is critical because health data often flows between state and federal systems. If states do not update their standards, inconsistencies could lead to gaps or inaccuracies in national datasets. In some cases, agencies may rely on estimated data instead of self-reported information, which is considered more accurate .

For communities of color, the issue is deeply personal. Many individuals have long felt that existing categories do not reflect their identities. The new standards aim to change that by allowing people to select multiple races and provide more detailed information about their background.

Health leaders say this shift could also help build trust. When patients see themselves reflected in data collection, they may be more willing to share information, improving the quality of the data and the decisions that follow.

The broader goal is to create a healthcare system that responds more effectively to the needs of a diverse population. “When the data shows more detail, leaders, doctors, and others can make better plans, programs, and services for different communities,” the toolkit explains in its community guidance materials .

As states move through their 2026 legislative sessions, advocates are urging policymakers to prioritize data modernization. The message is clear: better data leads to better decisions, and better decisions can improve health outcomes.

The push for data equity reflects a growing recognition that data is not just about numbers. It is about people, visibility, and ensuring that every community is counted.

Those interested can visit DataEquityCoalition.com to read or download the full toolkit and learn how to get involved. As health leaders emphasize, ensuring that communities are fully represented in data is not just a policy issue—it is a pathway to more equitable care and stronger health outcomes for all.