The UK needs a national data sharing infrastructure that enables the NHS and researchers to work in partnership, with clear mechanisms to protect patient privacy and data security

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The UK is well placed to become the standard bearer for data-driven health research and innovation. The COVID-19 pandemic showed how crucial clinical data is for developing treatments, vaccines and other life-saving interventions quickly and safely.

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We can lead the way in the use of data to enhance and expedite the research and development of new healthcare treatments, technologies and policies, alongside the clinical and regulatory processes for the appraisal, approval and monitoring of such innovations. This would enable research findings to be translated into improvements in patient care more quickly and safely.

Despite best efforts of the NHS and wider government, fragmented information, bureaucratic constraints, and a lack of public confidence in data sharing initiatives continue to limit our ability to harness data to transform patient outcomes. Public trust in data sharing has also been undermined by recent initiatives at national scale where there has been a lack of clarity over what data is being shared, how it will be used and how patient confidentiality and privacy will be protected.

The rise of Trusted Research Environments (TREs)

In response, we have now seen a large number of Trusted Research Environments (TREs) created at regional and local levels, alongside national specialist TREs for genomics. Unfortunately, this means we now have a fragmented data landscape where data cannot be optimised for research and innovation in the NHS or life sciences sector.

Such is the fragmentation that there are now calls for interoperability of TREs with common data and security standards, and leaves us with a set of unanswered questions: Will we get to a national coverage model for equity of research? Will research such as for rare diseases or post market surveillance be able to operate across such a fragmented landscape? Will care provider organisations relinquish control of how their data is used for what purposes? How will citizens control use of their data?

A National Technical Framework

Overcoming the barriers and addressing these questions, we believe the UK needs a national data sharing infrastructure that enables the NHS and researchers to work in partnership, with clear mechanisms to protect patient privacy and data security.

We propose a National Technical Framework to bring greater coherence, clarity and control to the way health data is managed and shared across the UK. This would enable the creation of a world-leading index of data for the entire country that gives care providers and citizens full control over their data, while enabling approved TREs, researchers and regulators to access clean, harmonised data for clearly defined research and post-market surveillance purposes. Technology is now available to support such a framework in a way that wasn’t possible a few years ago.

At Palantir, we propose a third way between the traditional choice of national data lakes or local fragmentation: a logically federated, locally controlled, cloud-based data infrastructure. In which each care provider has their own virtual compartment where their data can be transformed into suitable formats, and where they control what is released for approved purposes through digitally-enabled purpose based access requests.

This would enable care providers to maintain control over their data, whilst maximising the potential for research across the UK, and enable greater transparency and engagement with the public about how they want their data to be used. Furthermore, the local provider, be they a hospital, a provider collaborative or a PCN, would be able to use this local data store for quality and performance purposes as well as facilitating research; aligning the NHS and the research community’s common interest in better data.

Such a framework would allow the UK to improve and accelerate not only the research and development of new healthcare treatments and technologies, but also the clinical and regulatory processes that appraise, approve, and monitor them. It would enable geographies to put in place trusted health data environments that serve multiple purposes, beyond research, such as population health management and supporting MedTech innovation including AI/ML.

At Palantir UK, we envision a world in which health data is under the full control of care providers and citizens, while supporting accredited Trusted Research Environments, regulatory bodies and integrated care systems with access to clean, harmonised, privacy-preserving data to support the end to end lifecycle of life sciences and care provision.

Learn more about our Framework by downloading our Whitepaper.