Monitoring HIV Care in the United States: Indicators and Data Systems


Report at a Glance

  • Report Brief (PDF, HTML)
  • Table: Committee’s Recommended Core Indicators for Monitoring HIV Care (PDF)
  • Table: Summary of Data Systems for Monitoring HIV Care Identified by the Committee (PDF)

Advances in medical treatment have made it possible for people infected with HIV to live longer, healthier lives. The CDC estimates that 1.2 million people live with HIV in the United States, with approximately 50,000 people newly infected each year. People with HIV require continuous access to quality care and treatment for HIV as well as for their other health conditions. Access to and consistent use of medicines helps to improve health outcomes for people with HIV, reduces the risk of infected individuals transmitting the virus to others, among other benefits.

In July 2010, the White House Office of National AIDS Policy (ONAP) released its National HIV/AIDS Strategy (NHAS), which includes goals to increase access to care and optimize health outcomes for people with HIV, and to reduce HIV-related health disparities. At the same time, the Patient Protection and Affordable Care Act (ACA) is poised to bring millions of uninsured people – including many with HIV – into the health care system when it is implemented in 2014.
ONAP asked the IOM to identify core indicators related to continuous HIV clinical care and access to supportive services, and to monitor the effect of both the NHAS and ACA on improving HIV care. The IOM committee also was asked to identify the best sources of data to calculate the core indicators, as well as to describe potential barriers to data collection and the role of health IT in data collection. This report outlines a number of obstacles that prevent people with HIV from experiencing optimal health, identifies core indicators for use by the HHS to gauge the effects of the NHAS and ACA on improvements in HIV care and access to supportive services for people with HIV, and highlights 12 data collection systems that could be used to monitor the impact of the NHAS and ACA.