News — University of California, Irvine public health researchers have published a new report that shows the detrimental effects of aggregated data and the health outcomes of Pacific Islander and Asian American communities in California. The results emphasize the urgent need for disaggregated data to accurately reflect the diverse experiences within these populations.
“Invisibility Is Killing Us: Data Aggregation and its Health Impact on Pacific Islanders and Asian Americans in California,” has been by the UC Irvine Joe C. Wen School of Population & Public Health, in partnership with the Southern California Pacific Islander and Asian American Data Equity and Health Policy Collaborative, a coalition of eight leading health advocates and researchers who work across the state.
The collaborative surveyed nearly 40 health departments in California to understand their standard of practice for collecting information on race/ethnicity. Following the analysis of the collaborative’s findings, the report was presented at two in-person events to a total audience of 400 community leaders, policymakers, and healthcare professionals.
“This report strives for data equity and belonging, where belonging entails Pacific Islander and Asian American visibility and contributions in public health data,” shares Cevadne Lee, MPH, principal investigator of this research study and research manager at Joe C. Wen School of Population & Public Health. “We have an opportunity to discuss the report’s significance and strategize on actionable solutions with the changemakers in the room.”
Key findings from the report include the:
Current landscape on health data reporting practices: Only 6 of the 39 local health departments reported that they created their own standards of practice for collecting, analyzing and/or reporting race and ethnicity data. 11 of the 39 reported following federal to disaggregate racial and ethnic data. Solano County was the only health department that goes further to disaggregate Pacific Islander and Asian American data by subgroups. The majority of the local health departments stated that they do not have a standard of practice or policy and tend to use a secondary database like the U.S. Census to guide them.
Disproportionate health impacts: Aggregated data has contributed to health inequities, including deprioritized public health funding for certain chronic diseases like liver cancer, mental health challenges, and barriers to healthcare access among subgroups within these communities.
Importance of a community-centered approach: The decision to hold in-person reporting events at trusted venues within the community reflects the researcher’s commitment to bringing data back to the communities it seeks to serve. At the launch events, the report’s authors and community leaders shared powerful testimonies on how the lack of disaggregated data has impacted their lives. Their stories highlighted the real-world consequences of invisibility in health data, further emphasizing the need for immediate action.
“Having the opportunity to talk between researchers and community advocates like myself makes me believe our goal to drive meaningful change is possible,” shares Becky Nguyen, MPA, MPH, Executive Director at the Vital Access Cancer Foundation. “By centering the voices of those most affected and in my case Vietnamese cancer patients and survivors, this report has the potential to inform future health policies that are equitable and inclusive.”
The report’s authors and supporting organizations are calling on policymakers, public health officials and local health departments to prioritize the collection of disaggregated data. The researchers are recommending that the California Department of Public Health create a statewide standard for collecting and reporting race and ethnicity data, clarify their responsibilities for compliance monitoring and develop data collection policies and guidelines for state and local health departments.
For both local health departments and the California Department of Public Health, the researchers are recommending that there be more investment and attention on a community-centered approach when developing and implementing policies, collecting data, and reporting out on health outcomes.
“These community events underscore the significance of engaging directly with the communities most affected by these findings,” says , co-author and professor at Joe C. Wen School of Population & Public Health. “Invisibility Is Killing Us” serves as a crucial wake-up call to California’s health departments and beyond. The health of entire communities is at stake, and it is imperative that their experiences are no longer overlooked.”
About the Report
“Invisibility Is Killing Us” is a comprehensive policy analysis of the impact of data aggregation on the health of Pacific Islanders and Asian Americans in California. The report was created by the Southern California Pacific Islander and Asian American Data Equity and Health Policy Collaborative, a health policy research study of the UC Irvine Joe C. Wen School of Population & Public Health and is .
The report and research study were funded by the U.S. Department of Health and Human Services (HHS), through the Office of Minority Health (OMH).
Additional authors include Melenaite Fifita and Sora Park Tanjasiri, DrPH from Joe C. Wen School of Population & Public Health, Nancy Yap from Center for Asian Americans United for Self-Empowerment, Priscilla Huang, JD, from Center for Asian Americans in Action, Isa Sasi from Southern California Pacific Islander Community Response Team, Mary Anne Foo, MPH from Orange County Asian Pacific Islander Community Alliance, Inc., and Erica Juhn, MPH from Special Service for Groups, Inc.
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