HIV Surveillance Systems Capture Data Across the HIV/AIDS Care Continuum

systems capture data
  • National HIV Surveillance System (NHSS): NHSS is the primary source of HIV data for monitoring US HIV trends. NHSS is used by public health partners nationwide to understand trends in HIV diagnosis and care, identify risk factors and priority populations, and strategically plan and determine future programmatic needs. The data are reported by laboratory and healthcare providers to state or local surveillance programs, who in turn report the data to CDC. CDC performs data analysis and disseminates findings from such analyses. These data are also used locally to detect and respond to HIV clusters and inform programming on the data-to-care continuum.
  • National HIV Behavioral Surveillance (NHBS): NHBS is designed to capture information through interviews, using a standardized anonymous questionnaire and HIV testing trends in populations at increased risk for HIV (e.g., men who have sex with men, transgender women, people who inject drugs, and heterosexuals at risk) in 22 cities. This system provides information to help health departments improve prevention programs for persons at risk of HIV, as it captures information on sexual behavior, drug use, pre-exposure prophylaxis (PrEP) uptake and adherence, syringe sharing, HIV awareness, poverty status, and use of prevention services in these groups.
  • Medical Monitoring Project (MMP): MMP is designed to capture information on characteristics, experiences, and needs of people with HIV to guide and support local and national HIV prevention programs. Through interviews and medical record abstraction, MMP is the only nationally reported data on medical care for HIV and collects data on medical encounters, laboratory results, hospitalizations, and medications, including anti-retroviral treatment.
  • Youth Risk Behavior Surveillance System (YRBSS): YRBSS is a series of school-based surveys measuring adolescent health risk behaviors and experiences, including sexual behaviors related to HIV infection. It reports on risks that contribute to the leading causes of death and disability among youth and young adults and are an important resource to inform HIV prevention programs.  The YRBSS includes national, state, territorial, tribal, and local surveys of representative samples of 9th through 12th grade students. Interested states, territories, tribal governments, and local school districts may also choose to conduct a middle school survey.
  • *IQVIA: IQVIA Real World Data – Longitudinal Prescriptions database (“IQVIA data”) includes data on >90% of all prescriptions dispensed by retail pharmacies and 60%-86% dispensed by mail order outlets in the United States. CDC analyzes quarterly data received from IQVIA to estimate the number of U.S. prescriptions for PrEP), postexposure prophylaxis (PEP), and other HIV treatment drugs. This database provides information on persons prescribed these drugs and the healthcare providers who prescribed them. With these analyses, CDC is better able to monitor uptake and target program efforts to populations with the most need.

*Please note that the IQVIA dataset is purchased from an outside vendor.

CDC also uses EvaluationWeb® to collect National HIV Prevention Program Monitoring and Evaluation (NHM&E) data reported by CDC-funded health departments and community-based organizations (CBOs) to ensure program accountability and assess program performance at the national, state, and local levels.

  • EvaluationWeb: EvaluationWeb is a web-based data reporting system that serves as the central repository of NHM&E program data for HIV-positive and HIV-negative persons. The types of data reported through EvaluationWeb include HIV testing and partner services. These data are used by CDC to monitor and evaluate its funded HIV prevention strategies (e.g., PrEP, Linkage to HIV medical care) for 60 health departments and more than 100 CDC-funded CBOs.