Many federal agencies within the Department of Health and Human Services (DHHS), the Social Security Administration (SSA), and the Department of Veterans Affairs (VA), maintain major HIV-related databases. The databases maintained or sponsored by these agencies contain a range of potentially useful information, including epidemiologic and patient-level clinical data as well as health resource utilization, disability benefits, and insurance claims information. Despite the potential utility of these databases to address multi-agency policy issues, there is no single inventory that fully describes their study design, data collection methodology, and common and unique data elements. As a result, both policy makers and researchers may not be fully aware of the breadth of data available to support their policy making, administrative, program evaluation, and research needs.
This report is designed to help address this information gap. It is part of a project sponsored by the DHHS Office of the Assistant Secretary for Planning and Evaluation (ASPE) entitled “An Inventory of Federal HIV-Related Databases,” undertaken by the George Washington University Center for Health Services Research and Policy (CHSRP) under contract with ASPE. It is our hope that this resource can be used to catalyze collaborations among government agencies, philanthropies, industry, and academia to increase the understanding of HIV disease and its impact on the health care delivery system.
The inventory summarizes the types of HIV-related research supported by DHHS, SSA, and the VA. The report describes the major issues addressed by the various studies reviewed in the inventory, their study designs, and their research applications. The inventory is not exhaustive or comprehensive, it includes primarily major studies and databases. The report also identifies selected policy, clinical, evaluation, or other questions that might be the focus of new studies or database development. Finally, the inventory describes each major study and database in detail to provide additional information.