California’s healthcare data must adequately capture the full diversity of its population | Opinion

Picture this: You’re handed a form at the doctor’s office that asks for your race. You scan the list and see “Black/African American.” You pause and ponder if this one box captures who you are.

For me, an African immigrant from Nigeria, that box feels like wearing a coat two sizes too small — uncomfortable, misrepresentative and dangerous.

My culture, my history and even my health risks are distinct and cannot be reduced to a single box. The health risks for different Black communities vary significantly, and without detailed data, healthcare providers can miss critical nuances that could mean the difference between life and death.

Take breast cancer, for example: Disaggregated data revealed that while Black women in the U.S. have lower incidence rates than white women, their mortality rates are significantly higher.

Data disaggregation “refers to the process of breaking down or separating aggregated data into smaller, more specific groups to reveal patterns or disparities that may be hidden within a larger dataset,” according to The Oxford Review. “This practice allows for the examination of different subgroups based on factors such as race, gender, age, socioeconomic status or disability, which may be masked when viewing data as a single whole.”

This insight has driven efforts to address disparities in treatment and early detection. Imagine what more we could uncover and prevent with even greater disaggregation.

During the height of the COVID pandemic, certain groups suffered disproportionately because some states failed to report disaggregated data in a timely manner. This failure, rooted in health inequity, severely hindered efforts to allocate resources and provide targeted support to the hardest-hit communities.

California is one of the most diverse states in the nation, so why does our healthcare system still treat Blackness as a monolith?

Last March, the Office of Management and Budget updated its Statistical Policy Directive No. 15 to improve the collection of race and ethnicity data across federal programs. These changes include the option to report specific nationalities such as “Nigerian” and “Jamaican” within the broader Black/African American category. This granularity ensures that federal data reflects the rich diversity within racial groups.

While this is a step forward, the mandate applies only to federal programs, leaving states to decide whether to follow suit. So far, California has yet to take comprehensive action to ensure its healthcare data captures the full diversity of its population.

Some might argue that implementing these changes is just another bureaucratic hassle, but California has already demonstrated the feasibility of disaggregation through detailed data for Asian populations. The California Department of Human Resources, for instance, lists specific Asian nationalities such as Chinese, Filipino and Vietnamese in its workforce data. This approach acknowledges the diversity within the Asian race and sets an example for how data should be collected across all racial groups.

Expanding this framework to healthcare is a small administrative step with transformative potential.

Studies show that native-born Black people are more likely to smoke, drink and use drugs than foreign-born Black individuals. Native-born Black people also tend to have worse metabolic and cardiovascular outcomes, yet these insights remain buried under broad racial categories.

The urgent need for a disaggregated healthcare data system is only growing as the African immigrant population continues to expand. In one decade, the Black immigrant population in the U.S. increased by 23.5%, from 3.5 million in 2012 to 4.3 million in 2022. California, home to one of the largest African-born populations in the U.S., stands at the forefront of this demographic shift. Despite this growth, their unique health needs are often overlooked, as they are lumped into the broader “Black/African American” category.

A lack of specificity in data collection leaves health disparities unaddressed, perpetuating inequities. A disaggregated healthcare data system would reveal these disparities and empower policymakers to craft interventions tailored to specific groups.

California prides itself on leading the nation in equity and innovation. Embracing disaggregated healthcare data will promote a system that serves everyone equitably, starting with something as simple as letting people check a box that truly represents who they are.