For over two decades, the Department of Health and Human Services (DHHS), in the framework of the Healthy People prevention initiative, has set objectives to improve the health of groups of people bearing a disproportionate burden of negative health outcomes as compared to the total population. In Healthy People 2010, one of the main goals is to “Eliminate Health Disparities” among different segments of the population, including differences that occur by gender, race or ethnicity, education or income in areas including infant mortality, cancer screening and management, and childhood and adult immunizations. Accomplishing this goal will require improved knowledge about the determinants of disease and effective interventions for prevention and treatment. It will also necessitate improvement of the systematic collection, analysis, and interpretation, of health data for vulnerable groups.
Within HRSA, the Maternal and Child Health Bureau (MCHB) has identified the need for quality data to meet this goal by examining the analysis of data linkages among various databases such as Vital Records, WIC, Medicaid Eligibility, and Birth and Death Records. Analyses of these linkages in some state MCH agencies have provided some valuable information on identifying some determinants of health disparities (e.g. access, education, and socioeconomic status) that when addressed with intervention programs have narrowed the gap in some areas of health outcomes. The Office of Data Information and Management (ODIM) within MCHB, sought to assess the capacity of state MCH agencies to conduct data linkage activities throughout the country (for MCH priority areas, e.g. low birth weight, infant mortality, and newborn screening).
This study is being conducted in two phases. In Phase I, a survey instrument was designed in collaboration with ODIM, after integrating input gathered from a literature review, focused interviews with MCH leadership and epidemiologists, participation in a national meeting, and a preliminary query of select State MCH agency in the Northeast and Southeast Regions of DHHS (comprising of 14 states). In Phase II of the project, the survey will be administered to all of the state and territorial MCHB agencies in the 10 DHHS regions (totaling 59 agencies). The instrument will be administered to agency data contacts via electronic mail followed by a brief phone interview, documenting information on the use of data linkages to address racial and ethnic disparities in maternal and child health. Specifically, they will be asked to describe the following: 1) whether there were analyses conducted with linked data sets; 2) the problems or barriers encountered with performing the linkages; and 3) any plans for analytical projects/cross-cutting efforts to address health disparities. Findings will then be reviewed and recommendations will be made to the lead agency (MCHB, HRSA).
Of the agencies surveyed (Phase I), all have overriding initiatives to address health disparities, however not all agencies have specific activities to address the health disparity objective. Many barriers to such linkage activities were cited by the agencies, including the need for a clear initiative for projects to address the disparity objective and resources to better engage in linkage activities. In agencies that indicated specific activities to address health disparities, notable innovative programs were demonstrated to narrow the disparity gap in one or two indicators.
Data linkage activities can be a vital tool in providing data to address the goal of eliminating racial and ethnic disparities in health. The capacity for state MCH agencies to perform such analyses to address health disparities are limited and varied throughout the country, largely due to the lack of specific initiatives to address the goal and the lack of resources technical support needed to carry out the linkages activities. Further work should be focused on providing the proper infrastructure and addressing barriers that prohibit data linkage analysis. In time, the information retrieved could influence the development of policy to build state agencies' data linkage capacity and ability to make programmatic recommendations to reduce disparities in maternal and child health outcomes.
Michael D. Kogan, PhD, Director, Office of Data Information and Management, Maternal and Child Health Bureau, Health Services and Resources Administration