Data collection and reporting gaps harm Native Hawaiian and Pacific Islander health, study says

Despite Native Hawaiians and Pacific Islanders being one of the fastest growing populations, according to the 2020 U.S. Census count, the collection and reporting of their health data at the federal and state levels is virtually non-existent, according to a study led by the University of California, Irvine. This information omission has led to structural racism that disproportionately affects roughly 1.4 million Americans through an inability to advocate, a lack of resources and limitations to political power.

Their findings are published in the Journal of Health Politics, Policy, and Law.

"Our goal with this research is to bring to light the urgent need for social and health equity for Native Hawaiians and Pacific Islanders," said Brittany Morey, Ph.D., corresponding author and assistant professor from the UCI Program in Public Health. "In order to achieve that, this group must be included in the reporting of health data, especially in conjunction with community partners who rely on this information to advocate for resources."

The research team reviewed compliance with a 1997 mandate by the U.S Office of Management and Budget to disaggregate, or separate, Native Hawaiians and Pacific Islanders from the larger "Asian" ethnic category or "Other" ethnic category when collecting and reporting health data. They found that more than 30 percent of federal data sources failed to provide disaggregated Native Hawaiian and Pacific Islander data after more than two decades of being mandated to do so.

The COVID-19 pandemic provided a scenario for the team to study real-time reporting data to determine whether Native Hawaiian and Pacific Islander infection rates and deaths were being appropriately tracked. They found that less than half of the states were reporting disaggregated case data and only 30 percent were reporting death data.

"Of the states that are reporting disaggregated COVID-19 data, the rates for cases and deaths for NHPIs rank the highest compared to any other racial group in the vast majority of these states. This makes us think that NHPIs are experiencing a greater burden of COVID-19 even in states that don't report their data, but without the data there is little ability to advocate for needed resources," Morey said.

An analysis of the Healthy Places Index was also conducted. This metric that is used by the state of California to allocate COVID-19 resources to high-risk neighborhoods. The team found that the HPI underrepresents Native Hawaiians and Pacific Islanders, even while this group was experiencing the highest COVID-19 case rate (10,572 per 100,000) and death rate (204 per 100,000) in the state compared to all other race and ethnic groups.

Researchers recommend that governments, health agencies, and non-profits at all levels be required to collect and report data in accordance with the revised 1997 OMB guidelines. They also believe that stronger partnerships are needed between government, academic, and community-based organizations to increase Native Hawaiian and Pacific Islander sample sizes to make data more useful.

"Our work is far from complete. We continue to advocate for the appropriate disaggregation of Native Hawaiian and Pacific Islander data to achieve equity," said "Alisi Tulua, project director for the NHPI Data Policy Lab and study co-author. "By achieving data equity, our hope is that future generations will be able to achieve health and social equity for all communities of color."

The research team also included Malani Bydalek, Richard Calvin Chang, John C. Greer, Corina Penaia, Ninez A. Ponce, Nicholas Pierson and Karla Blessing Thomas, from the Native Hawaiian and Pacific Islander COVID-19 Data Policy Lab at the UCLA Center for Health Policy Research. Vananh D. Tran is from the David Geffen School of Medicine at UCLA.