Democratizing Native Hawaiian and Pacific Islander Data: Examining Community Accessibility of Data for Health and the Social Drivers of Health.

Making data accessible to communities is essential for developing community-driven solutions to address health inequities. In this analytic essay, we highlight the importance of democratizing data for Native Hawaiians and Pacific Islanders (NHPIs)-diverse populations that historically have had little access to their data-in the context of achieving equity in health and the social drivers of health. We provide a framework for evaluating community accessibility of data, which includes concepts of data availability, salience, cost, and report back. We apply the framework to evaluate community accessibility of NHPI data from 29 federal data sources. In addition, we provide results from a survey of NHPI-serving community organizations in California conducted from December 2021 to February 2022 to assess community data needs. Findings reveal federal gaps in data accessibility, as well as NHPI community organizational needs for increased data accessibility, data saliency, and technical capacity. Furthermore, organization leads expressed concerns about data privacy, security, and misuse. We provide recommendations for data custodians to improve accessibility of timely, accurate, and robust data to support NHPI communities. (Am J Public Health. 2024;114(S1):S103-S111. https://doi.org/10.2105/AJPH.2023.307503).

No Equity without Data Equity: Data Reporting Gaps for Native Hawaiians and Pacific Islanders as Structural Racism.

Data on the health and social determinants for Native Hawaiians and Pacific Islanders (NHPIs) in the United States are hidden, because data are often not collected or are reported in aggregate with other racial/ethnic groups despite decades of calls to disaggregate NHPI data. As a form of structural racism, data omissions contribute to systemic problems such as inability to advocate, lack of resources, and limitations on political power. The authors conducted a data audit to determine how US federal agencies are collecting and reporting disaggregated NHPI data. Using the COVID-19 pandemic as a case study, they reviewed how states are reporting NHPI cases and deaths. They then used California's neighborhood equity metric-the California Healthy Places Index (HPI)-to calculate the extent of NHPI underrepresentation in communities targeted for COVID-19 resources in that state. Their analysis shows that while collection and reporting of NHPI data nationally has improved, federal data gaps remain. States are vastly underreporting: more than half of states are not reporting NHPI COVID-19 case and death data. The HPI, used to inform political decisions about allocation of resources to combat COVID-19 in at-risk neighborhoods, underrepresents NHPIs. The authors make recommendations for improving NHPI data equity to achieve health equity and social justice.

Biospecimen Education Among Pacific Islanders in Southern California.

Despite increasing rates of cancer, biospecimen donations for cancer research remains low among Pacific Islanders (PIs). To address this disparity, researchers partnered with PI community organizations to develop and test a theory-based culturally tailored educational intervention designed to raise awareness about the issues surrounding biospecimen research. A total of 219 self-identified PI adults in Southern California were recruited to participate in a one-group pre-post design study. Participants completed questionnaires that assessed their knowledge and attitude regarding biospecimen research before and after viewing an educational video and receiving print materials. Results showed that participants' overall knowledge and attitude increased significantly from pre-test to post-test (p < .0001). Over 98% of participants also reported that they would be willing to donate at least one type of biospecimen sample. Efforts such as these that utilize culturally tailored education interventions may be instrumental in improving biospecimen donation rates in the PI community as well as other minority populations.