Including Island Areas
in Federal Public
Health Datasets
October 2022
1
Executive Summary
Public health datasets inform effective policymaking, guide intervention planning and 
resource distribution, and make the case for services and programs. As such, collecting 
and sharing data are crucially important to improving health equity. Federal public 
health datasets need accurate and relevant data to facilitate evidence-based policies 
and programs that improve health outcomes and reduce health disparities. 
Despite having some of the most challenging population health outcomes, the U.S. 
island areas—Puerto Rico (PR), U.S. Virgin Islands (USVI), Guam, Commonwealth of the 
Northern Mariana Islands (CNMI), American Samoa, Palau, Republic of the Marshall 
Islands (RMI), and Federated States of Micronesia (FSM)—are often absent within 
federal public health datasets. 
In a review of 32 commonly used federal public health datasets, only 18 (56%) include 
island jurisdiction data and only two (6%) include data from all eight island jurisdictions. 
Puerto Rico, the U.S. Virgin Islands, and Guam are best represented while Palau, the 
Marshall Islands, and the Federated States of Micronesia are least represented in 
these datasets. At least 11 (35%) datasets include no island representation. Island data 
collection and representation has facilitated improved island, regional, and federal 
public health policy and programming. The lack of island representation in key federal 
public health datasets obscures the pronounced health disparities and the need for 
programs and services throughout this region. 
Federal, island, and nonprofit partners should prioritize efforts to increase T/FAS inclusion 
in federal datasets to promote improved public health policy, planning, and programming. 
Next steps center around efforts to understand barriers to island inclusion, to ensure 
island capacity for vital statistics, and to map federal and multilateral agency data 
collection efforts.
About the Report
Established in October 2021, ASTHO’s Island Areas Workgroup (IAW) brings together
representatives from island jurisdictions, federal agencies, and trusted partners to 
address key administrative challenges impacting health outcomes in island jurisdictions, 
including efforts to strengthen procedures and organizational policies affecting health 
financing, data capacity, and workforce development.
The Data Capacity Subgroup submits this report to the IAW as a tool to guide future 
efforts to improve territorial and freely associated state (T/FAS) representation within 
federal public health datasets.
The IAW Data Capacity Subgroup thanks Dr. Janis Valmond, Deputy Commissioner,
U.S. Virgin Islands Department of Health for her leadership of the subgroup.
Additional thanks go to all subgroup members for their time and input and ASTHO
staff Alex Wheatley, Nicole Harris, and Corinne Gillenwater.
2
Summary
The United States outlying islands include five territories and three freely associated states.1 In a review of 
32 commonly used federal public health datasets (Appendix A), 18 (56%) contain at least one of these island 
jurisdictions. Inclusion in these datasets is not evenly distributed across the islands. PR (17), Guam (13),
and USVI (10) are best represented, while Palau (4), RMI (3), and FSM (2) are least represented (Figure 1).  
Figure 1. Island Areas Not Fully Represented in Federal Public Health Datasets
 
CDC’s National Program of Cancer Registries (NPCR) and COVID-19 Data Tracker include data from all eight 
island jurisdictions and are the most inclusive datasets considered in this report. These data sources align 
with regional success stories. For example, COVID-19 data has helped federal and regional partners address 
and champion island jurisdictions’ unique needs throughout the pandemic (during which many Pacific island 
jurisdictions avoided community spread until 2022). Comprehensive inclusion in the NPCR was achieved 
in 2007 when regional Pacific cancer control organizations applied for and received the NPCR cooperative 
agreement.2, 3 NPCR funding and data has been used in each island jurisdiction to support systematic and
data-driven cancer prevention and control.
Figure 2 shows island representation across the 18 datasets with at least one island represented. Table 1 
shows the eleven federal public health datasets that do not include island jurisdictions—a substantial gap. 
For example, the National Survey on Drug Use and Health is used to define the extent of substance use and 
mental health issues in the United States. And, while behavioral health is an emerging priority in the island 
jurisdictions, there are no island jurisdictions included in this survey. Appendix A delineates island inclusion
in key federal health datasets.
Island inclusion was not clearly defined in the methodology of three CDC datasets: the National Ambulatory 
Medical Care Survey, the National Electronic Health Records Survey, and the National Health Interview Survey. 
Additional research is needed to determine island inclusion in these datasets.
1.	 Territories: Puerto Rico, the U.S. Virgin Islands, Guam, the Commonwealth of the Northern Mariana Islands, American Samoa Freely associated states: 
Palau, the Marshall Islands, and the Federated States of Micronesia.
2.	 “NPCR Timeline.” National Program of Cancer Registries (NPCR), CDC. https://www.cdc.gov/cancer/npcr/timeline.htm
3.	 Palafox N, Given L, Hohman K, et al. “Comprehensive Cancer Control Planning in the Pacific: the Cancer Council of the Pacific Islands a multi-national 
regional coalition.” Cancer Causes Control. 2018 December ; 29(12): 1287–1295. doi:10.1007/s10552-018-1115-z. Available at https://stacks.cdc.gov/
view/cdc/61797.
Federal Public Health Datasets
PR
15
17
Guam
19
13
USVI
22
10
CNMI
24
8
A. Samoa
27
5
Palau
28
4
RMI
29
3
FSM
30
2
Island Represented
Island Not Represented
3
Figure 2. Island Representation Varies Across Federal Datasets*
 
Table 1. Federal Public Health Datasets with No Island Representation
States are significantly better represented than islands within these 32 federal public health datasets. Figure 3 
shows state (excluding Washington, D.C.) and island representation in the 20 datasets that report jurisdiction-
level data. Among these 20 datasets, 15 (75%) include data from all states while only two (10%) include data 
from all islands. On average, 49 states (98%) and three islands (36%) are represented in each of these datasets. 
Figure 4 shows state and island eligibility for inclusion among the 12 datasets that do not collect or report 
jurisdiction-level data (e.g., nationally representative surveys, regional registries, county monitors). Among 
these datasets, only two include some island jurisdictions (EPA Air Quality data includes PR and USVI. CDC 
ArboNET data includes Palau, PR, and Guam). Three datasets do not clearly define island eligibility and seven 
include only state-based data.
CDC COVID-19 Data Tracker
CDC National Program of Cancer Registries
CDC National HIV Surveillance System
CDC National Notifiable Diseases Surveillance System
CDC National Vital Statistics System
CDC ArboNET
BLS Census of Fatal Occupational Injuries
CDC Alzheimer’s Disease and Healthy Aging Data Portal
CDC Behavioral Risk Factor Surveillance System
CDC Youth Risk Behavior Surveillance System
EPA RSEI Database
EPA Air Quality System
BLS Survey of Occupational Injuries and Illnesses 
CDC National Immunization Survey
CDC National Assisted Reproductive Technology Surveillance
CDC Pregnancy Risk Assessment  Monitoring System
CDC USALEEP
0
1
2
3
4
5
6
7
8
Island Jurisdiction
*Figure 2 displays only federal datasets with participation from at least one island jurisdiction. Additional information regarding 
island inclusion within each federal public health dataset can be found in Appendix A.
CDC National Health and Nutrition Examination Survey (NHANES)
CDC PLACES Database
CDC National Hospital Ambulatory Medical Survey
CDC Pregnancy Mortality Surveillance System
CDC National Hospital Care Survey
CMS National Health Expenditures Accounts
CDC National Post-Acute and Long-Term Care Study
NCI Surveillance, Epidemiology, and End Results Program
CDC National Survey of Family Growth
SAMHSA National Survey on Drug Use and Health
CDC National Youth Tobacco Survey
4
Figure 3. State vs. Island Inclusion: Jurisdiction-Level Federal Public Health Datasets 
States
Islands
SAMHSA NSDUH 
EPA RSEI
CDC/ATSDR SVI
CMS Health Expen.
CDC YRBSS
CDDC USALEEP
CDC PRAMS
CDC PMSS
CDC PLACES
CDC Vital Stats
CDC NNDSS
CDC NIS
CDC HIV
CDC ART Survey
CDC COVID-19
CDC BRFSS
CDC Alzheimers/Aging
CDC NPCR
BLS OII
BLS FOI
Number of Islands Represented
Number of States Represented
0
8
4
30
25
35
40
45
50
5
The lack of island representation within commonly used federal public health datasets is a significant health 
equity issue with repercussions for island health programming and outcomes. Reasons for T/FAS exclusion 
from federal public health datasets vary and are not clearly defined in public-facing resources.
Anecdotally, an island jurisdiction may not be represented because it is ineligible for the relevant data 
collection program (e.g., the Census Bureau’s American Community Survey) or may not collect data of 
sufficient quality to meet database requirements. Where islands are eligible, populations may be too small for 
standard sampling protocols or island health measures may be perceived as too different from those of U.S. 
states to merit inclusion. 
Regardless of reason, there is a critical need to address these barriers and increase island jurisdiction 
representation in federal public health datasets.
Figure 4. State vs. Island Inclusion: Other Federal Public Health Datasets 
CDC ArboNET*
EPA Air Quality*
CDC NHCS
NCI SEER
CDC NTYS
CDC NSFG
CDC NPALS
CDC NHAMC
CDC NHANES
CDC NHIS
CDC NEHRS
CDC NAMC
0
10
20
30
40
50
0
4
8
Ineligible for Inclusion
Inclusion Eligibility Unknown
Eligible for Inclusion
*CDC ArboNET reports county-level case counts of mosquito-borne diseases; the system shows data from Puerto Rico, Guam, and Palau but may have 
capacity to report data from all island jurisdictions. The EPA Air Quality system reports pollution data by outdoor monitor, with monitors placed across 
the states, Puerto Rico, and U.S. Virgin Islands. Other islands’ eligibility for participation in this dataset is unclear.
Islands
States
6
Recommendations
Datasets are catalysts for change. They are tools to inform effective policies, guide intervention planning, 
and support strategies to improve health outcomes and achieve health equity. Increasing island jurisdiction 
representation in federal public health datasets is a critical island health equity issue with significant 
ramifications for island population health outcomes.
This report illustrates the underrepresentation of U.S. territories and freely associated states in common 
federal public health datasets. Stakeholders—including federal and island policymakers, data scientists, public 
health agencies, and partners—must work collaboratively to improve T/FAS representation in key federal public 
health datasets. 
The Data Capacity Subgroup submits this report—a tool to guide future efforts to improve T/FAS health data 
inclusion and visibility within federal public health datasets—to the Island Areas Workgroup with several 
recommendations and considerations.
1.	 The results of this study should be shared with the Government Accountability Office to inform their ongoing 
review of territorial representation in federal statistical agencies, as well as with other relevant partners.
2.	The Island Areas Council—with support from island representatives and partners—should work 
collaboratively to understand and address the barriers to island inclusion for the datasets highlighted in this 
report and other priority datasets.
a.	 Island feedback could further inform which of the datasets are prioritized for immediate action. Island 
inclusion in the CDC Vital Statistics System, CDC BRFSS, and American Community Survey (not addressed 
in this report) may have an outsized impact on overall island inclusion, as many surveys are based on 
or draw from these three datasets. Partners could also target those datasets in which all states are 
represented but no islands are represented. The subgroup wants to prioritize ensuring jurisdiction 
capacity for vital statistics and inclusion in the National Vital Statistics System. 
b.	Solutions at the federal level may require changes to individual practices, federal agency internal 
procedures, or Congressional authorizing language. Solutions at the island level may require changes to 
local data infrastructure, funding streams, policy, or reporting practices. 
c.	 An island data inclusion community of champions currently exists within the Data Capacity Subgroup. 
This group should be maintained and/or expanded to ensure progress on these efforts. 
3.	The subgroup should contact sub-regional multilateral partners—such as the WHO Western Pacific Regional 
Office, the Pan American Health Organization, and the Caribbean Public Health Agency— to understand 
T/FAS representation within these non-federal public health datasets. These datasets may be able to 
supplement or supplant data collected and reported within federal datasets.
7
Methods
The datasets featured in this report were compiled through three rounds of review. The initial set of datasets 
was pulled from the Aschengrau and Seage (2020)  list of the most significant sources of descriptive public 
health data.4 From there, a “snowball” method—in which datasets were added if they were referenced by the 
original dataset—was used to gather a broader round of public health datasets. 
Datasets entirely contained within other datasets were excluded (e.g., CDC Sudden Unexpected Infant Death 
Reporting is entirely captured within the CDC Vital Statistics System). Lastly, members of the IAW Data Capacity 
Subgroup provided feedback on additional datasets they would like to see included in the report. 
All descriptive information about the datasets was pulled from the respective dataset’s website and public-facing 
informational materials. Datasets were included if they featured up-to-date jurisdiction-level population public 
health data, aligned with island perceptions of critical sources of public health data, and were hosted by U.S. 
government federal agencies. These criteria were developed to ensure the results of this report would add
value to island jurisdiction data collection efforts and be actionable for federal partners engaged in the IAW. 
Further information regarding international dataset considerations is addressed in Appendix B.
This report is not intended as a comprehensive assessment of island inclusion in all federal public health 
datasets. Rather, it is intended as a small-scale review of island inclusion in a selection of important federal 
public health datasets in summer 2022.
In future years, the subgroup seeks to increase island participation in subgroup discussions to ensure subgroup 
activity aligns with and supports local data priorities.
4.	 Aschengrau, a., & Seage iii, g. r. (2020). “Sources of Public Health Data.” Essentials of epidemiology in public health (4th ed., pp. 77-97),
Jones & Bartlett Learning.
8
Table A1. Island Inclusion in Federal Public Health Datasets
Dataset
PR
USVI
A. Samoa
CNMI
FSM
Guam
RMI
Palau
BLS Census of Fatal
Occupational Injuries
Yes
Yes
No
No
No
Yes
No
No
BLS Survey of Occupational
Injuries and Illnesses
Yes
Yes
No
No
No
Yes
No
No
CDDC Alzheimer’s Disease
and Healthy Aging Portal
Yes
Yes
No
No
No
Yes
No
No
CDC ArboNET
Yes
No
Yes
No
No
Yes
No
Yes
CDC Behavioral Risk Factor
Surveillance System
Yes
Yes
No
No
No
Yes
No
No
CDC COVID-19 Data Tracker
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
CDC National Ambulatory
Medical Care Survey
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
CDC National Assisted Reproductive
Technology Surveillance System
Yes
No
No
No
No
No
No
No
CDC National Electronic
Health Records Survey
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
CDC National Health and Nutrition
Examination Survey
No
No
No
No
No
No
No
No
CDC National Health
Interview Survey
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
Unknown
CDC National HIV
Surveillance System
Yes
Yes
Yes
Yes
No
Yes
No
Yes
CDC National Hospital
Ambulatory Medical Survey
No
No
No
No
No
No
No
No
CDC National Hospital Care Survey
No
No
No
No
No
No
No
No
CDC National Immunization Survey
Yes
No
No
No
No
Yes
No
No
CDC National Notifiable Disease
Surveillance System
Yes
Yes
No
Yes
No
Yes
Yes
No
Appendix A
9
Table A1. Island Inclusion in Federal Public Health Datasets
Dataset
PR
USVI
A. Samoa
CNMI
FSM
Guam
RMI
Palau
CDC National Post-Acute
and Long-Term Care Study
No
No
No
No
No
No
No
No
CDC National Program
of Cancer Registries
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
CDC National Survey
of Family Growth
No
No
No
No
No
No
No
No
CDC National Vital Statistics System
Yes
Yes
Yes
Yes
No
Yes
No
No
CDC National Youth Tobacco Survey
No
No
No
No
No
No
No
No
CDC PLACES Database
No
No
No
No
No
No
No
No
CDC Pregnancy Mortality
Surveillance System
No
No
No
No
No
No
No
No
CDC Pregnancy Risk Assessment 
Monitoring System 
Yes
No
No
Yes
No
No
No
No
CDC USALEEP Database
Yes
No
No
No
No
No
No
No
CDC Youth Risk Behavior
Surveillance System
Yes
No
No
Yes
No
Yes
No
No
CDC/ATSDR Social Vulnerability Index
Yes
No
No
No
No
No
No
No
CMS National Health
Expenditure Accounts
No
No
No
No
No
No
 No
No
EPA Air Quality System
Yes
Yes
No
No
No
No
No
No
EPA RSEI Database
No
No
Yes
Yes
No
Yes
No
No
NCI Surveillance, Epidemiology,
and End Results
No
No
No
No
No
No
No
No
SAMHSA National Survey
on Drug Use and Health
No
No
No
No
No
No
No
No
Appendix A (Continued)
10
Appendix B
This report narrowly targets public health data hosted within domestic public health federal datasets (e.g., 
datasets hosted by HHS, EPA, DOI). It did not consider datasets hosted within internationally-oriented public 
health federal datasets (e.g., datasets hosted by USAID) or internationally-oriented public health datasets 
hosted by multilateral organizations (e.g., datasets hosted by WHO or the World Bank). 
The report was narrowly targeted to ensure its findings would be most relevant and actionable for participants 
within the IAW. The goal of this workgroup is advance health equity for U.S. territories and freely associated 
states through local and federal departmental coordination and administrative change. The findings of this 
report are intended to encourage administrative change within federal agencies to increase the visibility of 
island health disparities in federal datasets and within island health agencies to increase submission of quality 
island health data. In turn, these changes may increase opportunities for tailored support to help island heath 
leaders address local health disparities and improve health outcomes.
That said, it is important to recognize that international datasets are an important platform to promote global 
awareness of and multilateral technical assistance for island public health priorities. This is particularly true 
for the sovereign freely associated states, which are more likely to be include in these international datasets. 
In recognition of this fact, Table B1 summarizes the inclusion of U.S. territories and freely associated states 
in three sample international datasets, as recommended by members of the Island Areas Workgroup Data 
Capacity Subgroup.
Dataset
PR
USVI
A.Samoa
CNMI
FSM
Guam
RMI
Palau
WHO STEPS Survey
No
No
Yes
No
Yes
No
Yes
Yes
WHO Global Tobacco Survey: Adults
No
No
No
No
No
No
No
No
WHO Global Tobacco Survey: Youth
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Table B1. Island Areas Sometimes Represented in Commonly Used Global Health Datasets
ASTHO support for the Island Areas Workgroup is supported by the Centers for Disease Control and Prevention, Center for 
State, Tribal, Local, and Territorial Support (CSTLTS), Office of Island Affairs (OIA), under Cooperative Agreement OT18-1802 
Strengthening Public Health Systems and Services through National Partnerships to Improve and Protect the Nation’s Health.