Assessing HIV care and unmet need: Eight data bases and a bit of perseverance D. PERKINS 1 , B. E. MEYERSON 2 , D. KLINKENBERG 3 , & B. T. LAFFOON 4 1 Formerly of Saint Louis University, School of Public Health, St. Louis, MO, 2 US Policy Resource Group, LLC, Indianapolis, IN, 3 Missouri Institute of Mental Health, St. Louis, MO and 4 Missouri Department of Health and Senior Services, Bureau of HIV, STD, and Hepatitis, Jefferson City, MO Abstract This study integrated healthcare information from multiple data sources to measure access to HIV primary care in the St. Louis, Missouri area between 19982002. We describe the process of creating the collective database and the degree to which each dataset contributed to the calculation of global variables such as evidence of HIV primary care. Descriptive analyses were used to measure evidence of HIV primary among the included data sources. This study was the first of its kind to study HIV primary healthcare access over a period of five years with integrated databases. Findings reinforce the importance of HIV laboratory values as indicators of access to HIV primary healthcare, particularly in the absence of other health data sets. Limitations to the study were posed by data availability and integration of data sources with varying purposes and sophistication. Introduction The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was established in late 1990 to fund primary healthcare and support services that promote access to and retention in care for people living with HIV disease (PLWH). Participation in primary care by PLWH has been demonstrated to reduce HIV disease transmission (CDC, 2003; Crepaz et al., 2006; Jassen, et al., 2001; Weinhardt, 2005) as well as improve disease outcomes. Begin- ning in 2005, receipt of federal funding through the CARE Act required an assessment of HIV primary care utilization, given the importance of primary care access to health outcomes (Morgan, 2003). This analysis is frequently performed by federal grantees such as states and communities with incomplete, independently held, and often aggregate information. Of great interest to HIV policy communities is the concept of ‘unmet need’ and how to reduce it as we move to assure that more PLWH access HIV primary care after their diagnosis. ‘Unmet need’ is the term used by the US Health Resources and Serviecs Administration (HRSA) to describe a lack of primary care utilization within a defined period of time (usually one year) for PLWH who know of their HIV status. The requirement to measure Unmet need was included as an amendment in the re- authorization of the CARE Act in 2000 (Ryan White CARE Act Amendment, 2000) and in the Centers for Disease Control and Prevention (CDC) preven- tion initiative with PLWH (Morgan, 2003) to under- score the policy importance of access to HIV primary care. In 2003, HRSA formerly introduced a framework developed by the University of Califor- nia San Francisco to estimate unmet need, relying on proof of HIV-related laboratory tests (CD4 and viral load values) or HIV anti-retroviral drug therapies to indicate access of HIV primary care (Kahn et al., 2003). The ability to construct unmet need estimates relies upon the capacity to uniquely and accurately identify individual HIV and AIDS cases. Initial policy changes by the CDC (1999) and the CARE Act Authorization (2000) required inclusion of HIV case surveillance by 2005. At that time, some states had only incorporated surveillance for AIDS cases. Additionally, both the CDC and HRSA required name-based reporting for HIV and AIDS surveil- lance in order to qualify for federal funds as of 2007. These policy changes have made unmet need measurements more feasible, though estimates by states will vary in accuracy due to differences in duration of data collection (Institute of Medicine of the National Academies, 2003). As previously described (Meyerson et al., 2007), attempts to estimate unmet need for HIV primary care (Dean et al., 2005; Hayes et al., 2005; Ikard Correspondence: Dr. Beth Meyerson, Policy Resource Group, PO Box 217, McCordsville, IN 46055. AIDS Care, March 2008; 20(3): 318326 ISSN 0954-0121 print/ISSN 1360-0451 online # 2008 Taylor & Francis DOI: 10.1080/09540120701594784