UCLA Center for Health Policy Research commends revised federal data collection standards

Affirming years of work by demographic researchers and public health experts around the country, including at the UCLA Center for Health Policy Research, for more inclusive and precise data collection, the Biden administration today announced changes that expand how population data will be collected by the federal government. 

“My colleagues and I are beyond thrilled by this welcome and long-overdue news,” said Ninez A. Ponce, PhD, MPP, director of the UCLA CHPR and principal investigator of the California Health Interview Survey (CHIS). 

“It’s not possible to fully understand the unique experiences and needs of different racial and ethnic groups if we don’t allow individuals to identify themselves on a form as they identify themselves in daily life,” said Ponce, who in May 2023, joined leaders from the government, health, business and other sectors at a White House forum on Asian Americans, Native Hawaiians and Pacific Islanders. “As our society evolves to become ever more multi-cultural and multi-ethnic, these new rules are a crucial step toward recognizing that and toward achieving health equity. 

Since its founding 30 years ago, the UCLA Center for Health Policy Research has pioneered ways to democratize data and put it into the hands of the public in ways that inform, educate, and create change. When the Office of Management and Budget invited feedback last year on ways to improve demographic data collection, leaders of the UCLA CHPR’s California Health Interview Survey, Native Hawaiian and Pacific Islander Data Policy Lab, and Data Equity Center, each submitted detailed recommendations. 

The biggest change to Statistical Policy Directive No. 15 eliminates separate questions for selecting “race” and “ethnicity.” Instead, this will be one question that allows a person to choose the myriad ways they identify. 

Also, the category of “Middle Eastern or North African” has been added. And federal agencies will be required to collect more than the “minimum required race and ethnicity categories for most situations, to ensure further disaggregation in the collection, tabulation, and presentation of data when useful and appropriate,” the White House Office of Management and Budget said in its announcement of the first significant update since 1997.

“The Native Hawaiian and Pacific Islander label covers an incredibly diverse array of communities, each with their own language, customs, and traditions. These revisions have the potential to shine a light on the challenges facing Pacific Islander communities where they were once hidden,” said Calvin Chang, JD, director of the NHPI Data Policy Lab.

The experiences of Native Hawaiians and Pacific Islanders during the height of the COVID-19 pandemic exemplify the problems of overly broad racial and ethnic categories. Datasets that included NHPIs in the Asian category showed that other racial and ethnic groups were in far more jeopardy. However, in the few states that disaggregated NHPIs, data showed that the community was dying at the highest rates of any racial or ethnic group. Detailed NHPI and Asian subgroup data collections can more precisely detect health risks and target health policies and programs.

• Read more about the NHPI Data Policy Lab’s working during the pandemic in “A COVID Crisis Comes to Light”

“This is a landmark day for people who work on public health data,” said Ponce, who noted that CHIS is used by legislators, policymakers, local health departments, state agencies, health care providers, community organizations, advocacy groups, foundations, researchers, and many others. “We know that CHIS data has been essential to justifying programs that fight health threats and aid policies that improve public health. As people tout the benefits of ‘data-informed decisions,’ we must remember that data are only valuable when paired with thoughtful purpose and intention. To ensure that resources are directed to the people who need them, we must have data that reflects the diversity of our communities.”

Of particular importance, all the UCLA researchers noted, are the next steps. The announcement said that agencies must submit plans for complete compliance within 18 months and finish bringing all data collections and programs into compliance with the updated standards within five years. 

“If the point is to measure race- and ethnicity-based inequities and understand the ways in which these are produced and maintained over time, then we need data that in fact captures how people identify themselves,” said AJ Scheitler, director of the UCLA CHPR Data Equity Center and director of development, engagement, and strategic planning. 

The DEC offers free consultations to organizations and agencies across the United States to help ensure that historically marginalized populations are more accurately represented in datasets. This work includes data collection and questionnaire design, weighting, imputation, language domains, analysis, and dissemination.

“While many organizations launch offices, workgroups, and initiatives around data equity, there remains a gap between the desire to boost equity and the technical and methodological capability to operationalize the changes,” Scheitler said. “We recognize a network of highly talented subject-matter experts want to contribute to advancing data collection, reporting, and sharing to be more equitable, and we are partnering with many of them on this effort through our work at the DEC. Collectively we examine the challenges that data collectors encounter when trying to increase representation and work to build tools, models, and resources to achieve outcomes.”