The UK Health Data Research Alliance Board agreed to move beyond the ‘Green Paper’ phase of the Trusted Research Environment (TRE) programme at its meeting on 23 July 2020.
We are now pleased to publish our updated paper which is the result of a collaborative community effort. There was agreement in the concept and an aspiration to work towards TREs in the future, but also understandable concerns regarding how quickly TREs can meet different researchers’ needs.
We are now entering the more detailed design and delivery work set out in the next steps of the paper. The six areas identified for further work cover:
- Consistent and proportionate accreditation of safe people.
- Consistent accreditation of safe settings, with a focus on use of cloud computing.
- Involvement of public and patient representatives in the data access decision making process.
- Improved lay explanations of the design and functioning of TREs.
- Enhancing the researcher experience whilst minimising risks to privacy.
- Addressing the technical, governance and process challenges of creating a network of TREs through federation.
We know there is significant interest and activity in the field of TREs, both within healthcare and beyond. Many related developments are set out in the Green paper and others will emerge through this work.
Our intention is to draw on developments already underway to help shape the proposals, increase harmonisation and reduce fragmentation. We also want to engage with a wide set of stakeholders and are grateful for the contributions to date from organisations including:
- Patient and public representatives: UseMyData; Understanding Patient Data; medConfidential; Office of the National Data Guardian; and HDR UK Public Advisory Board
- UK Health Data Research Alliance members and other data providers: University Hospitals Birmingham; Liverpool Health Partners; NHS Digital; Genomics England; SAIL Databank University of Dundee; CPRD; and NIHR BioResource
- Academia: The Alan Turing Institute; the University of Manchester; University of Edinburgh University of Oxford; University of Swansea; and Wellcome Sanger Institute
- System-level stakeholders: DHSC; The Health Foundation; PRSB
- TRE Service Providers: AIMES; Aridhia; BC Platforms; and Faculty
- Consultancies: RISG Consulting; PA Consulting; Agile Health informatics Ltd
If you are interested to be involved in this work, please contact us via UKAlliance@hdruk.ac.uk.
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