Intelligent sharing: unleashing the potential of health and care data in the UK to transform outcomes

NAYLOR Annemarie, JONES Emily
Future Care Capital
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This report explores how the United Kingdom might support data-driven research and innovation to transform health and care. It argues that to achieve this the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals. The report examines the national context, providing a summary of the legislation governing health and care data handling, together with pertinent government strategies and initiatives, before presenting findings from desktop research and interviews with organisations pioneering the development of Integrated Digital Care Records. The report then explores the rationale and scope for the UK to build upon emergent practice from around the world and become a global leader in ‘data philanthropy’ – to push at the boundaries of existing plans and programmes, and support the development of and access to unrivalled health and care data sets. It looks at member-controlled ‘data cooperatives’ and ‘data communities’ operated by trusted intermediaries. In the final chapter, the report looks at how the UK can cement a health and care data advantage to proactively stimulate innovation and support related enterprise over the coming decade. Specifically, it calls for investment in health and care data skills, data-driven business clusters and ‘Living Labs’ to harness new technologies in community settings and asks the Government to explore the scope to introduce tax and other incentives for organisations prepared to Joint Venture with any National Health and Care Data Donor Bank. Finally, it recommends the Government develops a dedicated health and care data privacy shield applicable to future international trade discussions. (Edited publisher abstract)

Subject terms:
data collection, data protection, information sharing, information management, access to information, integrated care, ethics;
Content type:
practice guidance
United Kingdom
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