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Recommend a trial of a centralised Secure Data Environment and simplify ethical governance
Recommendation
Should our successor Committee wish to explore the reform of the UK health data strategy, we recommend it considers: • Investigating the replication of the academic model of open and competitive funding to solve problems and develop Privacy Enhancing technologies (PETs) and other critical pieces of data infrastructure as an alternative to internal or contracted software development work; • Recommending a trial comprising an over-resourced, centralised SDE covering a smaller number of trusts to build working templates, develop a skilled workforce and prove the security and privacy approaches to the public and industry. This would aid in obtaining widespread public support by swiftly demonstrating the viability and utility of the SDE model, supporting the success of further projects; • Recommending the implementation of a technical solution for the public to opt back into data sharing, and a targeted campaign to encourage those who have previously opted out to reconsider sharing their health data, now that data protection regulation and technologies have improved and tangible public benefits can be realised; • Recommending the consolidation of the Clinical Practice Research Datalink (CPRD) into the NHS SDE as soon as the latter meets all reasonable user needs, as the CPRD currently provides access to NHS data circumventing the protections of a TRE with significant overlap in functionality and replication of effort; • Recommending the simplification of ethical governance structures to avoid duplication and excessive overlap, and publishing an overview of this system so that all actors know where to obtain guidance; • Investigating the establishment of a single organisation solely responsible for delivering data architecture for public projects. This would assume centralised 72 Legacy – Parliament 2019–24 responsibility for the ongoing data projects by NHS England and other government entities, removing the fragmentation of skills across different bodies and facilitatin
Source
Report
Fourth Report - Legacy – Parliament 2019–24
29 May 2024
HC 826
Addressee Bodies
Department for Science, Innovation and Technology
Timeline
Recommendation age
2.0 yrs
Report published
29 May 2024