Development and Application of IT Systems in Biobank Studies

Abstract

Modern biobank studies tend to be extremely large and complex, and will need to continue for decades. Their success relies critically upon the development and application of comprehensive information technology (IT) systems, not only to collect and store data securely, but also to manage study operations efficiently. Across multiple categories of software, quality and efficiency advantages over traditional paper data collection are potentially profound. However, they can only be fully realised with a carefully planned and organised approach to establishing reliable and coherent infrastructure, selecting or developing software that meets requirements, and choosing the appropriate hardware upon which it will run. Whilst the technical aspects are myriad, the development of biobank IT systems should be centred on people, i.e., those who work on the study and those who participate in it. This guiding principle underpins all decisions throughout the lifecycle, from planning, through development, to implementation. Special care is needed when working with external IT teams, and when integrating specialist hardware into the study. A number of cross-cutting practical issues, such as data and system security, require careful consideration across the whole development effort.