Primary Submission Category: Health systems
Data Gaps in Health Monitoring and Surveillance Systems: The Case of the United States Commonwealth of Puerto Rico
Authors: Anna-Michelle McSorley
Presenting Author: Anna-Michelle McSorley*
An integral part of preserving the health of the United States (US) population is the maintenance of population-level health monitoring and surveillance systems (e.g., National Health Interview Survey, National Cancer Registry). In Puerto Rico (PR), a US territory since 1898, there are over 3.1 million US citizens in need of the vital public health infrastructure that maintains these data. As an entity of the US federal government, the Centers for Disease Control and Prevention (CDC) are responsible for ensuring inclusive data coverage across essential health monitoring and surveillance systems for all US citizens; however, little is understood about the CDC-supported data coverage of the US citizens residing in PR. Therefore, the purpose of this study was to assess the coverage of PR in existing CDC-supported systems with the goal of detailing existing gaps in US government-led monitoring and surveillance systems in the territory. This was accomplished through the process of data curation, which involved identifying, collecting, and categorizing data from multiple sources, including government administered health informatics platforms from the US Department of Health and Human Services, CDC, and PR Department of Public Health websites, as well as online data tools like CDC Wonder and the Surveillance Resource Center A-Z Index. This process produced a curated database of 93 active CDC-supported health monitoring and surveillance systems. These systems were then assessed to (1) quantify the inclusion/exclusion of PR and (2) compare the coverage of PR to the coverage of all 50 states in the union. Results revealed that PR was not covered in 54% of CDC-supported systems. Conversely, all 50 states were covered in 72% of CDC-supported systems. As a first step, this study provides baseline empirical evidence of significant data coverage gaps in PR. Future studies are needed to identify why these gaps persist to work towards improving data coverage for the territory.