Data Safe Havens are an essential way of managing risk of unauthorised re-identification of individuals from de-identified data. This risk heightens with increased data linkage across a wider range of data sets. To date, most of the focus of Data Safe Havens has been on the people, processes and technology required to deliver effective Information Security.
Our aim is for Alliance Trusted Research Environments (TRE) to be more than Data Safe Havens by meeting researchers’ technical and functionality requirements both now and in the future, whilst providing confidence to data custodians and the public through implementing a rigorous system of data access based on an evolution of the Five Safes model. This evolution is required to meet research needs for Machine Learning capability, High Performance Computing or High Throughput Computing e.g., for analysis of genetic and imaging data, and also to support the convergence of research and care to enable a future of personalised medicine.
Our initial activity is to develop a green paper on our approach for UK Health Data TREs for Alliance member organisations to consider, based on community conversations and building on current expertise.
In March 2020, we hosted a workshop that brought together a community of experts interested in improving the use of data for research in a safe and ethical way through the development of TREs. Representatives from the data custodian community, TRE service providers, HDR UK Public Advisory Board and funders attended the event. The outputs from this workshop informed the draft of the paper which we opened for wider consultation from 30 April to 26 May. The paper outlines our position on the characteristics required for TREs to support safe and ethical research using health data assets from data custodians within the Alliance. We will now incorporate the feedback received and will publish an updated version in the coming weeks.