National Partnership for Action to End Health Disparities (NPA) Federal Interagency Health Equity Team (FIHET) Data, Research and Evaluation Workgroup

Compendium of Publicly Available Datasets and Other Data-Related Resources

Introduction

Health and health care disparities in the United States adversely affect groups of people who have systematically experienced greater obstacles to health and health care based on their racial and/or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. Health and health care disparities are persistent and pervasive, negatively affecting not only the individual but also the nation as a whole.

In an effort to achieve health equity, the United States aligns itself with similar endeavors taking place throughout the world. These efforts emphasize risk factors that relate to social constructs rather than medical constructs and that are fundamentally and particularly toxic to health. These risk factors – otherwise known as social determinants of health – include low socioeconomic status, low educational achievement, and inadequate access to or utilization of quality healthcare. Other adverse determinants of health include residing in geographic areas that have poor environmental conditions (e.g., violence and inadequate access to healthy foods). Achieving health equity requires valuing everyone equally with focused and continuing societal efforts to address avoidable inequities, historical and contemporary injustices, and the elimination of health and health care disparities.

The National Partnership for Action to End Health Disparities (NPA) is a national movement designed to increase the effectiveness of programs and partners, leaders and stakeholders with the goal of eliminating health disparities. The NPA set forth the following five essential goals necessary for the elimination of health and health care disparities:
  1. Awareness – Increase awareness of the significance of health disparities, their impact on the nation, and the actions necessary to improve health outcomes for racial, ethnic, and underserved populations 
  2. Leadership – Strengthen and broaden leadership for addressing health disparities at all levels 
  3. Health System and Life Experience – Improve health and healthcare outcomes for racial, ethnic and underserved populations 
  4. Cultural and Linguistic Competency – Improve cultural and linguistic competency and the diversity of the health-related workforce 
  5. Data, research and evaluation – Improve the availability of data and the coordination, utilization and diffusion of research and evaluation outcomes 
To achieve these goals, the NPA involves partners from the federal, regional, and national and state levels. Federal agencies, such as the Departments of Agriculture, Commerce, Defense, Education, Health and Human Services, Labor, Justice, Transportation, Consumer Product Safety Commission, Environmental Protection Agency, Housing and Urban Development and Veterans Affairs, came together under the leadership of the Office of Minority Health to form the Federal Interagency Health Equity Team (FIHET). The purpose of the FIHET is to identify opportunities for federal collaboration, partnership, coordination, and/or action on efforts relevant to the NPA, provide leadership and guidance for federal, regional, state, and local efforts to address health equity, and infuse health disparities and health equity goals and strategies into internal member agency policies and practices. The FIHET is divided into several workgroups that deal with the NPA priorities, one of these being the FIHET Data, Research and Evaluation Workgroup. The FIHET Data, Research and Evaluation Workgroup’s first task was to develop a resource of publicly available data pertinent to research and programs aiming to end health disparities – the Compendium of Publicly Available Datasets (“the Compendium”). This task and the resulting resource reflect the participating federal agencies’ effort to identify opportunities within each of their institutions to promote equity in the social determinants of health by making data available and accessible to the public.


Process for Developing the Compendium

To initiate the process of developing the Compendium, a call was put out by the Workgroup to all FIHET members for data for which their agencies were responsible. A template was created by the Workgroup that federal agency representatives could easily complete. The template asked the representatives for the name of each dataset; the source for the data (e.g., URL link); a brief description of the dataset; the population target, disaggregated by age, race and ethnicity, foreign-born status, and socioeconomic variables; the smallest geographic unit for which the data were available (e.g., state, county); the years for which the data were available; and periodic reports, contact organization and additional comments. Each agency representative completed and sent the template to the Data, Research and Evaluation Workgroup chair. The Workgroup then reviewed the datasets for relevance and completeness and worked with each agency representative to obtain clearance on the content to add to the Compendium.


Use of the Compendium

This Compendium includes datasets from the following federal agencies under the U.S. Department of Health and Human Services: Administration for Community Living (ACL); Agency for Healthcare Research and Quality (AHRQ); Centers for Disease Control and Prevention (CDC); Centers for Medicare and Medicaid Services (CMS); Health Resources and Services Administration (HRSA); Indian Health Services (IHS); National Institutes of Health (NIH); and the Substance Abuse and Mental Health Services Administration (SAMHSA). Additional datasets from other federal partners, including the U.S. Environmental Protection Agency (EPA), Department of Transportation, Department of Labor, Census Bureau and the Department of Veterans Affairs, may be added later.

The Compendium is available to all interested parties, from researchers to lay persons, gathering information on populations affected by specific health outcomes. Depending on the user’s goals and objectives, these datasets can serve a variety of purposes from research, advocacy and policy reform to general public knowledge. For example, researchers interested in studying the specific health services that Americans frequently use, the cost of such services and their payment methods can access the Medical Expenditure Panel Survey (MEPS) data source available from the AHRQ and listed in the Compendium. Organizations with the mission to advocate for funding for youth education on the use of illegal drugs, alcohol, and tobacco and the problems associated with such use can access the National Survey on Drug Use and Health (NSDUH) from SAMHSA. Organizations interested in policy reform for children and families served by Head Start and Early Head Start Programs can access the Head Start Program Information Report (HSPIR) for data to support their proposed policy changes. These are just a few examples of how these publicly available data sources included in the Compendium can be utilized. Depending on the individual’s goals and objectives, he or she can download Excel files containing relevant information by federal agency and search by keywords or terms to find the data sources.

This Compendium is a work in progress to be updated with new and emerging data as more federal agencies partner with the NPA and FIHET. We hope the compendium will serve as a useful resource to those interested in achieving equity for all.
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Tech Support,
Dec 5, 2016, 10:24 AM