Data privacy by design: digital infrastructures for clinical collaborations

Abstract

The clinical sciences have arguably the most stringent security demands on the adoption and roll-out of collaborative e-Infrastructure solutions such as those based upon Grid-based middleware. Experiences from the Medical Research Council (MRC) funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project and numerous other real world security driven projects at the UK e-Science National e-Science Centre (NeSC – www.nesc.ac.uk) have shown that whilst advanced Grid security and middleware solutions now offer capabilities to address many of the distributed data and security challenges in the clinical domain, the real clinical world as typified by organizations such as the National Health Service (NHS) in the UK are extremely wary of adoption of such technologies: firewalls; ethics; information governance, software validation, and the actual realities of existing infrastructures need to be considered from the outset. Based on these experiences we present a novel data linkage and anonymisation infrastructure that has been developed with close co-operation of the various stakeholders in the clinical domain (including the NHS) that addresses their concerns and satisfies the needs of the academic clinical research community. We demonstrate the implementation of this infrastructure through a representative clinical study on chronic diseases in Scotland.