The next time you’re filling out a form at the doctor’s office, you may want to pause before skipping questions about your race and ethnicity. Communities of color and people of certain ethnic groups bear a higher burden of serious health issues than many others, and demographic information that patients provide is critical to helping public health officials understand how historical and ongoing inequities based on racism and other forms of discrimination can cause differences in health and health outcomes. Unfortunately, local and state health departments face numerous challenges when it comes to collecting and using this crucial data.
The Council of State and Territorial Epidemiologists (CSTE) works with public health agencies to advance epidemiologic surveillance efforts, including improvements in race and ethnicity data collection.
This interview with Annie Fine, CSTE’s chief science and surveillance officer, has been edited for clarity and length.
A: Data on race and ethnicity can be included with many different types of public health data. "Case surveillance" means reporting cases of tuberculosis, COVID-19, hepatitis, or even conditions related to things like childhood lead exposure. Then there’s what we call "syndromic surveillance," which is data that can signal health threats and trends in illness at a community level rather than an individual one. And, of course, there’s data on vaccinations as well as birth and death information. Race and ethnicity can be included with all of those, and it can be collected any place a patient seeks care, such as at any doctor’s office, testing site, or vaccination clinic.
A: Due to a long history of injustice based on racism in the United States, people of different races and ethnicities have experienced different burdens of disease and outcomes. During the first two years of the COVID-19 pandemic, for example, many communities of color faced worse outcomes than people in other communities, due in meaningful part to ongoing social, political, and historical factors. Even so, we didn’t always receive enough information to recognize these inequities, let alone act to mitigate them. In the pandemic’s early stages, race was missing in about half of all case reports and over three-quarters of all lab reports.
A: Yes. When vaccinations became available, public health agencies and the federal government made great efforts to improve the completeness of race and ethnicity information for those receiving the vaccines. That allowed us to better understand which communities were not being vaccinated or had less access to vaccines, which in turn made it easier for public health agencies to reach out to communities in need.
A: Yes, this matters beyond a once-in-a-century pandemic. Just having access to health care, getting tested appropriately for certain health conditions, and obtaining medication can be more challenging for people in different groups. Some communities may face higher rates of diseases or worse outcomes from those diseases. Public health agencies can try to remedy that by disseminating information about when to seek care or be tested for certain conditions and how to reduce disease transmission or improve overall health. But without thorough and complete data, it’s harder to identify the people who need support or attention.
A: As one example, when I worked in New York City’s health department, we learned that communities of color had higher COVID-19 infection rates but lower rates of vaccination. If we hadn’t had this information, we couldn’t have deployed health educators and community health workers—including those who spoke the appropriate languages—along with mobile vaccination units into those communities or worked with community organizations and other trusted messengers to encourage people to get vaccinated.
A: In most cases, when people are asked to describe their race, the categories available to them on forms are the ones required by a directive from the U.S. Office of Management and Budget (OMB): White, Black/African-American, Asian, American Indian, Native Hawaiian/Pacific Islander, or Other/Unknown. Questions about ethnicity tend to include just Hispanic/Latino or non-Hispanic/Latino. But many people don’t feel fully represented in the categories they’re offered. For example, someone may consider himself or herself Puerto Rican or Mexican but may not identify as Hispanic. Someone with a Middle Eastern background, such as being from Morocco or Algeria, may not consider himself or herself White but may not see a more appropriate option. Likewise, having the concepts of race and ethnicity be separate questions, and having only two options for ethnicity compared to multiple options for race, can be confusing for people.
A: Well, public health agencies in different places—or in the federal government—may struggle to analyze data from jurisdictions that collect and record it differently. On top of that, from a treatment standpoint, it’s not enough to know, for example, if Asian people broadly are at higher risk for a certain disease or condition—they’re not a monolith, and each community is different.
Fortunately, we’ve seen some movement on this: Some jurisdictions, as well as the federal government, are considering proposals that would change how these questions are asked, such as by combining the race and ethnicity questions into one, allowing more granular choices that would include selections such as Puerto Rican or Mexican, and adding Middle Eastern/North African as a category. Different states and localities have developed categories that may be more expansive, allowing people to describe themselves in terms that are closer to how they see themselves.
A: Here’s an example: During the pandemic, public health agencies in Hawaii had ample data on cases among people in each of OMB’s baseline race categories and saw a noticeably higher rate of COVID-19 in the Native Hawaiian/Pacific Islander categories. Public health officials understood that this population was much more diverse than that single, combined racial category and decided to take a closer look. They found that Pacific Islanders had a higher rate of COVID-19 than Native Hawaiians and, breaking it down further, that Marshallese and other Micronesian people had an even higher rate–more than 10 times higher among the Marshallese than among White people or Native Hawaiians. Without that degree of granularity in the information that was collected from people with COVID-19, public health officials might never have understood that the Marshallese and Micronesian people were affected the most by the pandemic.
A: When vaccines became available, public health leaders were able to provide information about the vaccines in a range of Pacific Island languages and to work closely with community leaders to share culturally appropriate messaging. Use of vaccines in Pacific Islander communities rose, and the case curve for these groups flattened.
Dr. Sarah Kemble, an epidemiologist at the Hawaii Department of Health who was involved in these efforts, said something that stuck with me: “We have to be cognizant that data alone are not sufficient to overcome historical and lived trauma and other systematic disparities. But data are a starting point to identify opportunities for improvement.”
A: In many cases, race and ethnicity data may be missing from reports that are sent to health departments. The reasons can vary. People presenting for care may wonder why they’re being asked for this information and decline to answer. Alternatively, they may identify as multiple races, but the system may not be able to record more than one answer, so they get captured as “multiracial” or “other.” In either case, that means their race won’t be known. If they’re classified as “other,” public health agencies won’t be able to understand what’s happening to people of different races or ethnicities. It’s essential that people understand why they’re being asked this question and how the information will be used, or else they may simply decline to answer.
A: First, it’s essential that we give people options to identify themselves in a way that truly represents them. For those who identify as Native American, or Middle Eastern or North African, or Chinese rather than Asian, we’re not able right now to collect and share granular data about their ethnicity across public health data systems. If your group doesn’t exist in the data, then you don’t exist in the eyes of policymakers and those who allocate resources. So we need to educate health care providers so they can collect better data and update the forms patients fill out to make it easier to fully self-identity, including letting patients identify with more than one race.
A: We need to upgrade electronic health record and public health data systems so that they're able to capture and exchange this information, which means having more options for recording race and ethnicity.
And state and local authorities should make it easier to share data both with public health agencies and with the public and the communities and people represented in the data. Any reportable event, such as an emergency room visit or interaction with a primary care doctor, should include race and ethnicity data that’s recorded in a standardized way—for example, a certain numerical or written code for a specific race that’s the same in multiple jurisdictions.
National policymakers could incentivize electronic ordering of tests through the Centers for Medicare and Medicaid Services’ Promoting Interoperability Program, which could make it easier to record race and ethnicity when a request is sent to a lab.
A: No. While national standards can set a baseline, states and local jurisdictions should be able to collect additional nuances depending on their populations. For example, a city or state that has a large Hmong population might want to include that ethnicity as an option.
A: Yes, all of this will take a lot of work, time, funding, and collaboration—among providers, public health agencies, federal policymakers, communities, and others. But we must find ways to support the health of communities that have born a disproportionate burden before, so that history won’t repeat.