An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Use Of Federally Supported HIV-Related Research


An array of HIV-related research has been supported by the federal government since the 1980s to address key HIV policy, epidemiologic, and clinical issues.1 This research has focused on essential areas including:

  • Epidemiology;
  • Behaviors associated with transmission and prevention of HIV;
  • Therapeutics and treatment strategies;
  • Clinical practice, including effectiveness of therapeutics and quality of care;
  • Organization, delivery, and financing of clinical and support services; and
  • Service program administration and evaluation.

As illustrated in this inventory, the federal government has supported several HIV-related research strategies in these essential areas:

  • On-going population and institution-based surveys, such as the National Health Care Survey (NHCS) and its various subsidiary surveys funded by the National Center for Health Statistics (NCHS), have been expanded to address HIV-related questions. Their study designs have been maintained intact, with additional HIV-related questions added. Because these surveys have a broader focus than HIV, the nature and scope of HIV-related issues that they address is narrowly defined. Additionally, the sample sizes of the surveys have not been expanded, and thus the resuls of these surveys have limited generalizability to HIV positive populations or institutions serving people with HIV.
  • Existing administrative databases, such as those maintained by DHHS and VA to support administrative and policy information needs, have been expanded. Some of these databases have been slightly modified to include HIV-related data that are required to administer and monitor services provided to the populations for which they are responsible. Others have been modified to provide data needed to conduct research in a variety of clinical, financing, organizational, policy, and other research areas.
  • Existing health care financing and income maintenance program databases, such as those maintained by the DHHS Health Care Financing Administration (HCFA(now known as CMS)) to administer the Medicaid and Medicare programs, have been adapted to conduct HIV program evaluations and health services, financing, clinical, and epidemiologic research. The disability claims system maintained by SSA has also been used by federally funded researchers to conduct HIV financing studies and program evaluations.
  • Newly established administrative, epidemiologic, financing and clinical databases have been supported to monitor statutory and administrative requirements, administer service programs, and evaluate programmatic performance. The Health Resources and Services Administration (HRSA), for example, has established several databases used to monitor the activities of grantees of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. These databases include cross-sectional data obtained from administrative, epidemiological, financial, and clinical information systems maintained by governmental and direct service agencies. The Centers for Disease Control and Prevention (CDC) has established several databases to monitor trends in the HIV epidemic, address epidemiological research questions, and act as the basis for allocation of federal HIV services and prevention funds. These databases include HIV Counseling and Testing Reports and the HIV/AIDS Reporting System (HARS).
  • Newly established HIV-related research databases have been supported by the Agency for Healthcare Research and Quality (AHRQ), ASPE, CDC, HRSA, National Institutes of Health (NIH), and other federal agencies. The study designs of these databases vary substantially. Some studies, such as the Healthcare Cost and Services Utilization Study (HCSUS), have used sampling to achieve a nationally representative cohort of HIV positive adults that are followed for a time-limited period to address care utilization and cost questions. Other studies, such as the AIDS Cost and Services Utilization Survey (ACSUS), were designed as time-limited longitudinal studies, but used convenience samples that had limited generalizability. In other population-based studies, such as the HIV Epidemiologic Research Study (HERS) and the Multicenter AIDS Cohort Study (MACS), long-standing natural cohorts of volunteers have been studied to address an array of epidemiologic, clinic, health care financing, and health services research questions. The study designs are sufficiently flexible to allow emerging issues to be addressed with the existing cohorts.
  • Ad hoc population or institution-based studies, such as the CDC-funded HIV Outpatient Study (HOPS) and outcomes studies supported by HRSA were conducted to address emerging policy topics.

Federally supported HIV-related databases reflect a variety of research designs. Table 1 summarizes the temporal nature (i.e., cross-sectional versus longitudinal) of the study designs used to create the databases included in the inventory. The table also outlines the types of data that are collected in the database (e.g., population-based surveys, administrative data sets, medical record reviews, clinical specimen collection and physical examinations, and interviews conducted in conjunction with physical examinations). As indicated in Table 1, many of the population-based surveys conducted by NCHS and the CDC are cross-sectional. The HIV/AIDS Bureau of HRSA also maintains primarily cross-sectional databases. Databases maintained by the SSA, HCFA(now known as CMS), and the VA are longitudinal. The SSA and HCFA(now known as CMS) databases are primarily administrative. In contrast, the VA maintains databases that include administrative records, medical records, specimen data, and physical examination data reflecting the nature of their multi-faceted responsibilities. Longitudinal databases supported by the NIH, AHRQ, and CDC include medical record, laboratory specimen, physical examination, and interview data.

Table 2 summarizes the types of research areas covered by the databases. Many HIV-related databases supported by the federal government have been used to conduct research in several areas: policy studies, program evaluation or performance measurement, clinical research or therapeutic effectiveness, epidemiologic studies, health services research, and health care financing studies. The database descriptions in the inventory provide further details about the designs used. Many of the databases have policy applications either for issues specifically pertaining to HIV, or relating to the role of HIV in a broader health care financing and service delivery context. Many of the databases also contribute to the federal government’s ability to evaluate programs either directly or indirectly by measuring outcomes of health care financing and services delivery systems.

1 - The federal government has also supported basic research and drug and vaccine development. These research topics are outside the scope of this project.