estimate these indicators. The committee was also asked to address a series of specific questions related to the collection, analysis, and dissemination of such data (Box S-1). The IOM convened a committee of 17 members with expertise in HIV clinical care and supportive services, health policy, data collection and analysis, informatics, and other relevant areas to respond to this charge.
COMMITTEE’S APPROACH TO ITS CHARGE
NHAS targets for increasing access to care and improving health outcomes for PLWHA and for reducing HIV-related health disparities by 2015 (Box S-2) provided the basis for several of the indicators recommended by the committee.2 The committee also reviewed existing indicators of HIV care and measures of HIV care quality. These include Healthy People 2020 objectives and President’s Emergency Plan for AIDS Relief (PEPFAR) indicators that pertain to HIV care and supportive services, as well as performance measures for HIV care that were endorsed by the National Quality Forum, an organization that sets national consensus standards of performance in health care. The committee also reviewed current guidelines for HIV treatment. The committee identified indicators linked to benchmarks along the continuum of HIV care, from diagnosis through virologic suppression (Figure S-1).
The committee compiled a list of 32 public and private data systems and data collection agencies, including ones highlighted in the project proposal from ONAP and others identified by the committee as potentially important sources of information on HIV care and supportive services. The committee reviewed both HIV-specific data systems and data collection activities, such as epidemiologic studies of PLWHA and Ryan White HIV/AIDS Program data, and those that are not HIV specific but capture information on care received by PLWHA, such as Medicaid and Medicare claims data. The committee requested information from individuals who are familiar with the data systems and data collection activities in the areas of HIV testing and linkage to care, clinical care, access to care, treatment and adherence, financial security, need for supportive services, demographics, risk behavior assessment, and patient experience with care. The committee then compared the compiled information against the data elements needed to estimate the indicators to identify the best sources of
2The committee interpreted its charge as focusing on the population of people living with HIV/AIDS (PLWHA) who have been diagnosed with HIV. Therefore, the committee did not identify indicators to monitor the National HIV/AIDS Strategy (NHAS) objective related to reducing the occurrence of new HIV infections, although some of the indicators promote reduced HIV transmission as well as improved health outcomes for PLWHA.