For its first report, the committee requested information from 29 data systems on the types of data collected (e.g., data on demographics, access to care, need for supportive services) to identify best sources of data to estimate the committee’s recommended core indicators. The committee revisited these data sources for this second report to identify those that capture data relevant to monitoring the care experiences of people with HIV within the context of the ACA, such as health care coverage and utilization. The committee considered which data collection efforts could best produce nationally representative estimates of people with HIV in the United States and which best capture data on health coverage and utilization at the state level. The committee also considered the extent to which the various data sources capture information to estimate indicators of care quality for people with HIV. Care quality will be important to monitor as the ACA is implemented because continuity of care may be disrupted and the range of benefits available to individuals may shift as they move among sources of care coverage.

The committee reviewed several existing national population-based health surveys as potential sources of data on health care coverage and utilization for a nationally representative sample of people with HIV, including the National Health Interview Survey, the Medical Expenditure Panel Survey; the National Health and Nutrition Examination Survey; the Behavioral Risk Factor Surveillance System; and the National Survey on Drug Use and Health. These surveys capture data relevant to monitoring care within the context of the ACA, for example, on sources of care coverage, care utilization, and demographic information. However, due to the relatively low prevalence of HIV in the general U.S. population, the number of people with HIV included in a given sample will be too small for meaningful analysis. In addition, population-based health surveys were not designed to generate representative estimates for people with specific diseases. Including questions about HIV serostatus and additional questions on HIV care experiences for HIV-infected individuals in national surveys, therefore, would not be adequate to generate nationally representative estimates of their health care coverage and utilization.

Although the statement of task refers generally to “people living with HIV,” the committee chose to focus this report on people living with a diagnosis of HIV in the United States. The committee did not interpret its charge to include people with HIV who are undiagnosed as there is no practical way to obtain a “large sample (nationally representative or otherwise)” of people living with HIV that includes such individuals. In addition, the committee limited the population under consideration to adults and adolescents (ages 13 and older). The use of antiretroviral therapy to reduce or prevent

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