Representation of U.S. Territories In National Health Datasets and the Downstream Impacts on Health Policy and Funding Abstract

Background and Purpose: The five U.S. territories — Puerto Rico, the U.S. Virgin Islands, Guam, the Northern Mariana Islands, and American Samoa — are home to approximately 3.7 million U.S. nationals who face significant health disparities and socioeconomic challenges. Despite their status as part of the United States, territories are frequently excluded from federal and national health datasets, limiting the availability of data needed to understand and address their unique health needs. This study examines the extent to which U.S. territories are included in key national health datasets and explores the downstream impacts of their exclusion on health policy, funding, and service delivery. The guiding research question is: To what extent are U.S. territories represented in federal and national health datasets, and what are the consequences of their exclusion?

Methods: A systematic review of federal and national health datasets was conducted to assess territory inclusion. Datasets examined included the CDC Vital Statistics, the Behavioral Risk Factor Surveillance System (BRFSS), the American Community Survey (ACS), the Census Bureau Community Survey, the County Health Rankings (CHR), the Area Deprivation Index (ADI), and the Social Vulnerability Index (SVI). Each dataset was reviewed for territory inclusion, availability of territory-specific data, and the degree to which social determinants of health (SDOH) data were accessible for territorial populations.

Results: Findings reveal significant and widespread exclusion of U.S. territories from national health datasets. Of the five territories, Puerto Rico is most frequently represented in public datasets, while the remaining four territories are largely absent. Key datasets critical to health policy and research — including the BRFSS and the ACS — include only a subset of territories, resulting in substantial gaps in SDOH data for territorial populations. National datasets frequently fail to specify whether territory data is included, creating additional barriers for researchers and policymakers. The absence of territory data in source datasets produces downstream exclusion from tools, measures, indices, and funding allocation models that rely on these datasets, ultimately limiting the resources and policy attention directed toward territorial communities.

Conclusions and Implications: The exclusion of U.S. territories from national health datasets represents a significant health issue with impacts for policy, funding, and service delivery. Without reliable data, the health needs of territorial populations remain invisible to decision-makers. Social workers are well-positioned to advocate for the inclusion of U.S. territories in national data collection efforts and to elevate the voices of territorial communities in federal policy discussions. This study calls for action to expand data collection in the territories.