Enhanced information technology framework and public-patient involvement in UK national HIV databases.

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

In the UK, a collection of clinical and laboratory datasets have arisen from the management of patients infected with HIV. Whilst these databases have become increasingly integrated over the last five years, changes to the health service environment, the changing nature of the HIV epidemic and local information technology resource limitations mean that they may no longer be able to address the research questions of most importance to the HIV population. Furthermore, the linkage of these databases raises concerns around data confidentiality that must be addressed. Our proposal includes three main activities: 1) the development of existing databases to enhance their quality and completeness, to ensure that all databases continue to meet good practice standards in data security, and to develop a platform for integrated data that will ultimately facilitate easier integration of the NHS Care record as it comes online; 2) the development of tools to link viral epidemiology data with surveillance data and the use of these to uncover the gynamics of viral spread in the UK; and 3) the provision of necessary training and public engagement activities to reinforce the importance of data protection and privacy management in this highly sensitive disease area.