approximately 3,000 participants. HCSUS participants were interviewed several times over a 3-year period (a baseline interview with follow-up interviews at 6 and 12 months). In addition to the interview, participants’ medical, pharmacy, and financial records were abstracted and a subset of participants had their blood drawn for laboratory testing. Among the study’s main objectives was to guide policy decisions on the allocation of health care resources by providing reliable national estimates of the health care services received by people with HIV and on the costs of those services (RAND, 2011). The HCSUS offers a number of insights and lessons learned concerning the generation of nationally representative estimates of the care experiences of people with HIV, several of which have been incorporated into the MMP protocol. The committee uses HCSUS as a reference throughout its discussion of MMP in this chapter’s section on how to continue to regularly obtain data to monitor health care coverage and utilization after 2014.
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. These include the National Health Interview Survey (NHIS), which is the principal source of information on the health of the non-institutionalized U.S. population (CDC, 2012a); the Medical Expenditure Panel Survey (MEPS); the National Health and Nutrition Examination Survey (NHANES)1; the Behavioral Risk Factor Surveillance System (BRFSS); and the National Survey on Drug Use and Health (NSDUH). Although 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), the number of people with HIV included in a given sample will be small because the prevalence of HIV in the general U.S. population is less than 1 percent (Shapiro et al., 1999; UNAIDS, 2010). A 2007 study that combined 2002-2004 MEPS data to evaluate the relationship between Ryan White HIV/AIDS Program service utilization and patient characteristics identified 125 people with HIV (Rein, 2007). Even the NHIS, which interviews between 75,000 and 100,000 individuals each year, will not include sufficient numbers of people with HIV to draw meaningful conclusions about their care experiences. Furthermore, while these population-based surveys are designed to be representative of the general U.S. population, they are not designed to be representative of people with any specific disease (CDC, 2010d; Shapiro et al., 1999). Including questions about HIV serostatus and
1In addition to an interview component, the NHANES includes an examination involving medical, dental, and physiological measurements and the administration of laboratory tests, including HIV antibody tests. Findings from the NHANES are designed to determine the prevalence of and risk factors for diseases (CDC, 2011a).