Corina Penaia

Summary: Making data accessible to communities is essential for developing community-driven solutions to address health inequities. In this analytic essay, authors 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.

Authors provide a framework for evaluating community accessibility of data, which includes concepts of data availability, salience, cost, and report back. Researchers apply the framework to evaluate community accessibility of NHPI data from 29 federal data sources. Results from a survey of NHPI-serving community organizations in California conducted from December 2021 to February 2022 to assess community data needs are provided.

Findings: 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. Authors provide recommendations for data custodians to improve accessibility of timely, accurate, and robust data to support NHPI communities.

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

Summary: The Native Hawaiian and Pacific Islander (NHPI) Data Policy Platform is a resource for change agents, policymakers, community activists, and data-driven institutions seeking to improve their data processes to better address NHPI needs and develop more fruitful relation­ships with NHPI communities. Developed by the NHPI Data Policy Lab at the UCLA Center for Health Policy Research, this platform details the harm created by data systems that inadequately reflect NHPI communities’ challenges and strengths while proposing a framework and specific recommendations for improving data systems for NHPIs. The platform reflects input and feed­back provided by more than 135 NHPI community leaders across multiple states.

NHPI data needs are present throughout the data life cycle, which the platform divides into four pillars:

1. Data Collection
2. Data Analysis
3. Data Use, and
4. Data Access

Disaggregated NHPI data historically either have failed to have been collected, have had insufficient NHPI data collected to allow for meaningful analysis, or have been inaccessible to NHPI com­munities. This platform recommends a data equity framework centered on addressing these issues through meaningful inclusion of NHPI communi­ties throughout the development and implementation of data processes and using partnerships to build the NHPI community’s self-sufficiency and ca­pacity to work with data.

NHPI leaders expressed the need to develop processes that encourage and incentivize building community capacity and applying community-centered principles across all four pillars. Prominent recommendations for these two cross-cutting recommendation categories include lasting, sustain­able investment in NHPI communities to strengthen data literacy, analytical expertise, and community-friendly data reporting.

NHPI community leaders identified numerous high-priority issue areas negatively impacted by a lack of quality NHPI data. These priority areas in­clude

1. Civic Engagement
2. Criminal Justice Reform
3. Climate Justice
4. Community Capacity
5. Economic Justice and Housing
6. Education
7. Health
8. Immigration, and
9. Women’s Rights

NHPI community organi­zations addressing these issues are frequently hampered by the lack of NHPI data, placing them at a disadvantage when advocating for resources from data-driven funders, agencies, and decision-makers. Improving data systems and data accessibility would allow NHPI organizations to improve their ability to advocate for systems change, resources, and culturally and linguistically relevant programs. Improved data would also help identify systemic barriers in each of these areas and evaluate the impact of interventions for NHPI communities.

Specific recommendations are provided for government agencies, policy­makers, and data-driven institutions to help guide implementation of the proposed framework and broader recommendations. Common themes across these recommendations include establishing values-driven relation­ships and community partnerships, increasing investment in NHPI commu­nities’ capacity to work with data, and implementing data standardization and linkage protocols to maximize the value of data.

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• Policy Research Report: Native Hawaiian and Pacific Islander Data Policy Platform: No Equity Without Data Equity

​Summary: 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 to political power. Authors conducted a data audit to determine how U.S. 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. Last, authors calculated the extent of NHPI underrepresentation in communities targeted for COVID-19 resources in California using the state’s neighborhood equity metric — Healthy Places Index (HPI).

Findings: Analysis shows that while there has been improvement in collection and reporting of NHPI data nationally, federal data gaps remain. States are vastly underreporting — over 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, systematically underrepresents NHPI communities. Authors make recommendations for improving NHPI data equity to achieve health equity and social justice.

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

Summary: 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. Authors 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.

Native Hawaiians and Pacific Islanders (NHPIs) experience some of the highest COVID-19 death rates of all racial and ethnic groups in the United States. 

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