UCLA CHPR researchers warn of threats to ‘data democracy’

As health data about underrepresented populations disappears from federal websites, Ninez A. Ponce, PhD, MPP, director of the UCLA Center for Health Policy Research (CHPR), and four colleagues explain in a new journal article what’s at stake and offer suggestions to encourage and protect robust data collection that represents everyone.

Their opinion piece was published April 22 in the Milbank Quarterly, an esteemed, multidisciplinary journal of population health and health policy, that explores the social origins of health in society and examines the implications of health policies. 

“If the federal government is backing away from its historical role as a leader in advancing data quality and data democracy, what does it mean for the future of representation and evidence-based policy development? The answer has wide-ranging implications,” wrote Ponce and UCLA CHPR’s Tara Becker, PhD, senior research associate; Riti Shimkhada, PhD, senior research scientist; AJ Scheitler, EdD, director of the UCLA CHPR Data Equity Center; and Susan Babey, PhD, director of research and the Health Promotion and Disease Prevention Program.

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 White House Office of Management and Budget invited feedback in 2023 on ways to improve demographic data collection, leaders of the UCLA CHPR’s California Health Interview Survey (CHIS), Data Equity Center, and Native Hawaiian and Pacific Islander Data Policy Lab each submitted detailed recommendations. 

A few key points raised in the Milbank Quarterly article:

• “Much of the research data infrastructure in the United States relies on data collected directly by the federal government, research funding received from the federal government, and/or population estimates derived from federal data to benchmark or standardize population estimates.”
• “The limited information that is available suggests that rather than expanding efforts to improve data democracy at the federal level, particularly for transgender and gender expansive populations, these efforts will contract in the near future.”
• “State, Tribal, and local public health and other departments typically have the legal power to gather and share disaggregated population-level data. Thus, these non-federal entities, as well as independent researchers and survey administrators can play a central role in advancing data democracy and improving measurement at this time.”