Liberating Data: Accessing Native Hawaiian and Other Pacific Islander Data from National Data Sets

Background: The limited data available show that Native Hawaiians and Other Pacific Islanders (NHOPI) experience severe health, social, economic, and service access inequities compared to the majority of Americans. Challenges faced by organizations who serve NHOPI include decentralized communities, limited service access, distrust of non-NHOPI services, and not least of all, limited and poor data. The Native Hawaiian Epidemiology Center (NHEC) works with the Pacific Islander Epidemiology Center to confront the poor state of and access to information on NHOPI health. Methods: Traditional epidemiologic approaches enhanced through the application of business intelligence methods and technologies can significantly improve the accessibility, ease of analysis/reporting, and ultimately use of large health-relevant data sets. Using data from the National Center for Health Statistics, we assessed the quality of death reporting in accordance with OMB standards, developed a working definition for NHOPI, performed an analysis of deaths counts and rates for several racial categories, modeled the data for consumption through data structures optimized for analysis and reporting (on-line analytic processing cubes), and delivered information to users through MS Excel on the desktop and interactive web-based dashboards. Results: The NHEC mortality analysis tool set allows rapid analysis and reporting of death counts and rates by several dimensions of interest, including racial category, age, sex, location, and cause of death. Through the use of pivot tables and charts, mortality measures can be cross-tabulated, sorted, filtered and graphed along any combination or number of dimensions. Conclusion: Information technology plays a critical role in ensuring access to data for small populations who bear the largest health disparities in the US. Data is essential for decision support; such as informing policy decisions, program planning and evaluation, and assessing health. A partnership between Federal agencies, community organizations, scientists, and information technologists can result in successful liberation of health data.