An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Filling Gaps in HIV-Related Research: Opportunities for Collaboration

07/01/2000

Several developments in HIV pose new challenges and opportunities for federally supported and and other research endeavors. These developments include:

  • Rapid introduction of new, expensive HIV antiretroviral therapies which are used in combination in demanding, complex treatment regimens;
  • Increasing demand for chronic disease services as HIV positive individuals live longer and enjoy greater quality of life from antiretroviral therapy;
  • Growing numbers of HIV positive minority populations, women, and injecting drug users, many of whom have poor access to care and substantial needs for substance abuse and mental health treatment and social support services;
  • Continued lags between HIV counseling and testing and initiation of treatment;
  • Disparities in access and quality of care among HIV positive individuals, even among individuals enrolled in Medicaid and receiving their care from providers supported by the Ryan White CARE Act;
  • New understanding of the need to better integrate HIV financing streams to more effectively use resources, as well as eliminate gaps in health care coverage as HIV positive individuals transition through the spectrum of HIV disease;
  • Emerging health care delivery models that adopt managed care strategies; and
  • Growing evidence that existing models of health care delivery and financing for people with HIV have substantial opportunities for improving accessibility and quality of care.

These emerging developments and new insights into the changing nature of the HIV epidemic and evolving health care delivery and financing system present interesting or unique opportunities for research collaboration- not only among federal agencies but also in partnership with academic, clinical, and health services researchers, the pharmaceutical industry, and others in the research community. A number of research questions that could be addressed through such collaborations might include:

  • Why do lags continue between HIV counseling and testing and initiation of treatment? How can HIV counseling and testing services be more effectively linked with HIV care? What behavioral, educational, and service delivery strategies effectively assist newly identified HIV positive individuals to rapidly enter and remain in HIV treatment?
  • What impact has the use of new HIV antiretroviral therapies had on the natural history of HIV disease?
  • What effect do comorbidities have on the course and manifestations of HIV disease?
  • How do rates of dissemination of new HIV antiretroviral therapies vary among sub-populations? What impact do those variations have on the natural history of disease among sub-populations of HIV positive individuals?
  • What educational strategies and clinical and social support services can effectively assist HIV positive individuals who are using antiretroviral therapies?
  • How has the growing demand for chronic disease services by HIV positive individuals affected the organization and financing of HIV service delivery systems?
  • What types of care and social services can most effectively meet the needs of minority populations, women, and injecting drug users? What measures are needed to close the gap in access to care among these groups?
  • What is the quality of care being provided to HIV positive individuals? How can quality be improved?
  • What steps are necessary to better integrate HIV financing streams to more effectively use resources and eliminate gaps in health care coverage?
  • What is the impact of managed care programs, such as those implemented by Medicaid, on HIV care and social support service providers and HIV positive individuals?

The new challenges presented by emerging issues in the HIV epidemic provide an opportunity to design and support research that involves creative, effective approaches to using current databases and designing new databases that can rapidly address emerging questions that affect public policy, clinical practice, health care financing, and other key areas. This opportunity will require new collaborations among consumer advocates, clinicians, policymakers, industry, foundations, and other key stakeholders.

Table 1. Summary of the Study Designs of HIV-Relevant Databases

DATABASE

Crosssectional

Longitudinal

Survey

Administrative

Medical Records

Specimens & exam

Interview

Department of Health and Human Services

             

Agency for Healthcare Research and Quality

             

AIDS Cost and Services Utilization Survey

  X     X   X

Healthcare Cost and Utilization Project

X     X X    

HIV Cost and Services Utilization Study

  X     X S X

Centers for Disease Control and Prevention

             

Adult/Adolescent Spectrum of Disease Project

  X     X    

Behavioral Risk Factor Surveillance System

X   X        

HIV Counseling and Testing System

X         S X

HIV Epidemiologic Research Study

  X     X X X

HIV Outpatient Study

  X     X    

HIV/AIDS Reporting System

  X     X   X

Multiple Cause-of-Death Files

X     X      

National Ambulatory Medical Care Survey

X   X   X   X

National Death Index

X            

National Health Examination Statistics Surveys

X   X     X X

National Health Interview Survey

X   X       X

National Home and Hospice Care Survey

X   X   X   X

National Hospital Ambulatory Medical Care Survey

X   X   X   X

National Hospital Discharge Survey

X   X   X    

National Nursing Home Survey

X   X   X   X

National School-Based Youth Risk Behavior Survey

X   X        

National Survey of Ambulatory Surgery

X   X   X    

National Survey of Family Growth

X   X       X

Pediatric Spectrum of HIV Disease Project

  X     X    

Supplement to Routine HIV and AIDS Surveillance

X           X

Health Care Financing Administration(now known as Centers for Medicare and Medicaid Services(CMS))

             

Medicaid Statistical Information System

  X   X      

Medicare

  X   X      

HRSA HIV/AIDS Bureau

             

AIDS Drug Assistance Program Monthly Report

X     X      

AIDS Education and Training Centers

X   X X      

Annual Administrative Report

X     X      

Uniform Reporting System Client Data Demonstration Project

  X   X X    

Grantee Applications, Titles I and II

X     X      

HIV/AIDS Dental Reimbursement Program

X     X X    

Special Projects of National Significance Program

X X   X X   X

Title III Program Data Report

X     X X    

Title IV Data Reporting System

X     X X    

National Institutes of Health

             

Adult AIDS Clinical Trial Group

X X     X X X

AIDS Link to the Intravenous Experience

        X X X

Terry Beirns Community Programs for Clinical Research on AIDS

X X     X X  

HIV Vaccine Clinical Trials Network and HIV Prevention Clinical Trials Network

X X X   X X X

Multicenter AIDS Cohort Study

  X     X X X

Reaching for Excellence in Adolescent Care and Health

  X     X X X

Women and Infants Transmission Study

  X     X X X

Women’s Interagency HIV Study

  X     X X X

Substance Abuse and Mental Health Administration

             

HIV Outreach Demonstration Program

X X X X     X

Department of Veterans Affairs

             

Immunology Case Registry (ICR)

  X   X X X  

Social Security Administration

             

Title II, Title XVI Concurrent Determinations

  X   X      

S (specimens only)


Table 2. Summary of the Research Applications of HIV-Relevant Databases

DATABASE

Policy

Program Evaluation

Clinical

Epidemiology

Health Services Research

Department of Health and Human Services

         

Agency for Healthcare Research and Quality

         

AIDS Cost and Services Utilization Survey

X X X   X

Healthcare Cost and Utilization Project

X       X

HIV Cost and Services Utilization Study

X X X   X

Centers for Disease Control and Prevention

         

Adult/Adolescent Spectrum of Disease

X X X X  

Behavioral Risk Factor Surveillance System

X X   X  

HIV Counseling and Testing System

X        

HIV Epidemiologic Research Study

  X X X  

HIV Outpatient Study

  X X    

HIV/AIDS Reporting System

X X X X  

Multiple Cause-of-Death Files

    X X  

National Ambulatory Medical Care Survey

X     X X

National Death Index

X   X X X

National Health Examination Statistics Surveys

X   X X  

National Health Interview Survey

X     X  

National Home and Hospice Care Survey

X     X X

National Hospital Ambulatory Medical Care Survey

X     X X

National Hospital Discharge Survey

X     X X

National Nursing Home Survey

X     X X

National School-Based Youth Risk Behavior Survey

X X   X  

National Survey of Ambulatory Surgery

X     X X

National Survey of Family Growth

X     X  

Pediatric Spectrum of HIV Disease Project

X X X X  

Supplement to Routine HIV and AIDS Surveillance

X X X X  

Health Care Financing Administration(now known as Centers for Medicare and Medicaid Services(CMS))

         

Medicaid Statistical Information System

  X X X X

Medicare

  X X X X

Health Resources and Services Administration, HIV/AIDS Bureau

         

AIDS Drug Assistance Program Monthly Report

X X     X

AIDS Education and Training Centers

X X      

Annual Administrative Report

X X      

Uniform Reporting System Client Data Demonstration Project

  X X   X

Grantee Applications, Titles I and II

X X     X

HIV/AIDS Dental Reimbursement Program

X X     X

Special Projects of National Significance Program

X X X   X

Title III Program Data Report

X X     X

Title IV Data Reporting System

X X     X

National Institutes of Health

         

Adult AIDS Clinical Trial Group

    X    

AIDS Link to the Intravenous Experience

    X X  

Terry Beirns Community Programs for Clinical Research on AIDS

    X    

HIV Vaccine Clinical Trials Network and HIV Prevention Clinical Trials Network

X     X  

Multicenter AIDS Cohort Study

    X X X

Reaching for Excellence in Adolescent Care and Health

  X X X  

Women and Infants Transmission Study

  X X X  

Women’s Interagency HIV Study

  X X X  

Department of Veterans Affairs

         

Immunology Case Registry (ICR)

  X X   X

Social Security Administration

         

Title II, Title XVI Concurrent Determinations

X X     X