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).

East is east or is it? Racialization of Asian, Middle Eastern, and Pacific Islander persons.

The conventional use of racial categories in health research naturalizes "race" in problematic ways that ignore how racial categories function in service of a White-dominated racial hierarchy. In many respects, racial labels are based on geographic designations. For instance, "Asians" are from Asia. Yet, this is not always a tenable proposition. For example, Afghanistan resides in South Asia, and shares a border with China and Pakistan. Yet, people from Afghanistan are not considered Asian, but Middle Eastern, by the US Census. Furthermore, people on the west side of the Island of New Guinea are considered Asian, whereas those on the eastern side are considered Pacific Islander. In this article, we discuss the complexity of the racial labels related to people originating from Oceania and Asia, and, more specifically, those groups commonly referred to as Pacific Islander, Middle Eastern, and Asian. We begin with considerations of the aggregation fallacy. Just as the ecological fallacy refers to erroneous inferences about individuals from group data, the aggregation fallacy refers to erroneous inferences about subgroups (eg, Hmong) from group data (ie, all Asian Americans), and how these inferences can contribute to stereotypes such as the "model minority." We also examine how group averages can be influenced merely by the composition of the subgroups, and how these, in turn, can be influenced by social policies. We provide a historical overview of some of the issues facing Pacific Islander, Middle Eastern, and Asian communities, and conclude with directions for future research.

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.

Disparities in Native Hawaiian and Pacific Islander COVID-19 Mortality: A Community-Driven Data Response.

As of March 2021, Native Hawaiians and Pacific Islanders (NHPIs) in the United States have lost more than 800 lives to COVID-19-the highest per capita death rate in 18 of 20 US states reporting NHPI deaths. However, NHPI risks are overlooked in policy discussions. We discuss the NHPI COVID-19 Data Policy Lab and dashboard, featuring the disproportionate COVID-19 mortality burden for NHPIs. The Lab democratized NHPI data, developed community infrastructure and resources, and informed testing site and outreach policies related to health equity.

Building the NHPI Data Policy Platform to Identify the Most Pressing SDOH Policy Domains for the NHPI Community.

Access to accurate Native Hawaiian and Pacific Islander (NHPI) social drivers of health (SDOH) data is crucial for understanding health needs and shaping effective public health strategies. However, this data often gets obscured within broader racial and ethnic categories making NHPI issues invisible. Moreover, NHPI communities face barriers when published data formats are inaccessible to community-based organization staff. To tackle these challenges, we initiated the Assessing Social Determinants of Health Data Through Local Data Intermediaries Initiative (AHEAD), supported by the federal Office of Minority Health. We developed two community-centered resources:1. The NHPI Data Policy Platform, shaped by 138 NHPI community leaders from 13 states and Washington, D.C., representing nine NHPI subgroups. This platform highlights NHPI priority issues and provides equitable data policy recommendations for advocates and policymakers.2. An NHPI SDOH Dashboard for California Counties, tailored to offer accessible data for community-based organization staff, ensuring better-informed interventions and support.

Considerations of Racism and Data Equity Among Asian Americans, Native Hawaiians, And Pacific Islanders in the Context of COVID-19.

Purpose of Review: The COVID-19 pandemic has revealed the importance of considering social determinants of health, including factors such as structural racism. This review discusses some of the evidence that triangulates on this issue, including data from hate crime statistics, social media analysis, and survey-based research. It also examines the data needs for Asian Americans, Native Hawaiian, and Pacific Islander (NHPI) communities. Recent Findings: The available data provides evidence that the pandemic has contributed to an increase in anti-Asian sentiment and discriminatory incidents. Many reports have surfaced showing a surge in anti-Chinese discrimination, which has "spilled over" into other Asian communities. Research is beginning to emerge to show that such discrimination may also impact health issues such as psychological distress. Given prior research, we would expect many more studies to emerge in the future. Also, the pandemic has illustrated the major gaps in data available to disentangle the health and social concerns facing Asian Americans and NHPI communities. Significant issues include the lack of systematic reporting of data for these communities both across states, and even among agencies within a state; erroneous aggregation of Asians with NHPIs; and censoring of data. These gaps and issues contribute to bias that obscures objective data and amplifies health inequalities. Summary: The COVID-19 pandemic has had a negative impact on the well-being of Asian American and NHPI communities. It is critical to provide disaggregated data, not only so that we can have accurate reporting, but also to ensure data and health equity.

Exploring the Paradoxical Relationship of a Creb 3 Regulatory Factor Missense Variant With Body Mass Index and Diabetes Among Samoans: Protocol for the Soifua Manuia (Good Health) Observational Cohort Study.

BACKGROUND: The prevalence of obesity and diabetes in Samoa, like many other Pacific Island nations, has reached epidemic proportions. Although the etiology of these conditions can be largely attributed to the rapidly changing economic and nutritional environment, a recently identified genetic variant, rs373863828 (CREB 3 regulatory factor, CREBRF: c.1370G>A p.[R457Q]) is associated with increased odds of obesity, but paradoxically, decreased odds of diabetes. OBJECTIVE: The overarching goal of the Soifua Manuia (Good Health) study was to precisely characterize the association of the CREBRF variant with metabolic (body composition and glucose homeostasis) and behavioral traits (dietary intake, physical activity, sleep, and weight control behaviors) that influence energy homeostasis in 500 adults. METHODS: A cohort of adult Samoans who participated in a genome-wide association study of adiposity in Samoa in 2010 was followed up, based on the presence or absence of the CREBRF variant, between August 2017 and March 2019. Over a period of 7-10 days, each participant completed the main study protocol, which consisted of anthropometric measurements (weight, height, circumferences, and skinfolds), body composition assessment (bioelectrical impedance and dual-energy x-ray absorptiometry), point-of-care glycated hemoglobin measurement, a fasting blood draw and oral glucose tolerance test, urine collection, blood pressure measurement, hand grip strength measurement, objective physical activity and sleep apnea monitoring, and questionnaire measures (eg, health interview, cigarette and alcohol use, food frequency questionnaire, socioeconomic position, stress, social support, food and water insecurity, sleep, body image, and dietary preferences). In January 2019, a subsample of the study participants (n=118) completed a buttock fat biopsy procedure to collect subcutaneous adipose tissue samples. RESULTS: Enrollment of 519 participants was completed in March 2019. Data analyses are ongoing, with results expected in 2020 and 2021. CONCLUSIONS: While the genetic variant rs373863828, in CREBRF, has the largest known effect size of any identified common obesity gene, very little is currently understood about the mechanisms by which it confers increased odds of obesity but paradoxically lowered odds of type 2 diabetes. The results of this study will provide insights into how the gene functions on a whole-body level, which could provide novel targets to prevent or treat obesity, diabetes, and associated metabolic disorders. This study represents the human arm of a comprehensive and integrated approach involving humans as well as preclinical models that will provide novel insights into metabolic disease. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/17329.