Data Management and Analyses in HIV-1 Therapeutic Studies

Abstract

The focus of this PhD is to demonstrate how routinely collected de-identified patient information can be used for basic science, clinical science and population science health research. Examples are provided on how routinely collected information from people living with HIV-1 (PLHIV) can provide strategic health information, enabling stakeholders to develop and implement strategies to improve the use, cost, outcome and impact of HIV-1 service provision. As more PLHIV are on combination anti-retroviral therapy (cART), the increasing number of PLHIV requiring long-term use of health services has long-term resource implications. De-identified personal information that are systematically collected and analysed can provide information to monitor and evaluate the use, cost, outcome and impact of HIV-1 service provision. The basic science study identified PLHIV who were long-term non-progressors and HIV controllers managed in a HIV referral centre and determined factors that contributed to their atypical prolonged asymptomatic infection. The clinical science study assessed the impact of HIV-1 infection, cART and age on renal insufficiency in PLHIV managed at the referral centre. The population science study used information from an established national multicentre prospective monitoring system to report changing use and population cost of HIV-1 services in the UK, and estimated future population costs arising from projected increases in the number of PLHIV using NHS services. Despite recognised problems associated with observational data, the utility of de-identified personal information for such research was demonstrated. Personal health information needs to be collected longitudinally to ensure development of good electronic medical records nationally and globally requiring appropriate information technology aswell as analytic expertise. Main lesson from this PhD is that de-identified individual level information can be used at local, regional and national levels to monitor and evaluate the effectiveness, efficiency, equity and acceptability of HIV-1 and other health services provided.