Abstract
IntroductionAnalysis of linked health data can generate important, even life-saving, insights into population health. Yet obstacles both legal and organisational in nature can impede this work.ApproachWe focus on three UK infrastructures set up to link and share data for research: the Administrative Data Research Network, NHS Digital, and the Secure Anonymised Information Linkage Databank. Bringing an interdisciplinary perspective, we identify key issues underpinning their challenges and successes in linking health data for research.ResultsWe identify examples of uncertainty surrounding legal powers to share and link data, and around data protection obligations, as well as systemic delays and historic public backlash. These issues require updated official guidance on the relevant law, approaches to linkage which are planned for impact and ongoing utility, greater transparency between data providers and researchers, and engagement with the patient population which is both high-profile and carefully considered.ConclusionsHealth data linkage for research presents varied challenges, to which there can be no single solution. Our recommendations would require action from a number of data providers and regulators to be meaningfully advanced. This illustrates the scale and complexity of the challenge of health data linkage, in the UK and beyond: a challenge which our case studies suggest no single organisation can combat alone. Planned programmes of linkage are critical because they allow time for organisations to address these challenges without adversely affecting the feasibility of individual research projects
Highlights
Analysis of linked health data can generate important, even life-saving, insights into population health
Linkage of health data and other forms of public sector data in the UK is an under-utilised resource for public interest research
While our second two case studies relate to England and Wales respectively, the Administrative Data Research Network (ADRN) was an attempt to bridge the data divisions across the UK
Summary
Analysis of linked health data can generate important, even life-saving, insights into population health. Obstacles both legal and organisational in nature can impede this work. Approach We focus on three UK infrastructures set up to link and share data for research: the Administrative Data Research Network, NHS Digital, and the Secure Anonymised Information Linkage Databank. Analysis of linked health data across national or local populations has enormous public interest potential. In their Briefing on what was to become the Digital Economy Act 2017 or ’DEA’ as we shall refer to it in this paper, the Royal Statistical Society noted as follows:
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