Mourby, MJ;
Doidge, J;
Jones, KH;
Gilbert, R;
Aidinlis, S;
Smith, H;
Bell, J;
... Kaye, J; + view all
(2019)
Health Data Linkage for Public Interest Research in the UK: Key Obstacles and Solutions.
International Journal of Population Data Science
, 4
(1)
, Article 09. 10.23889/ijpds.v4i1.1093.
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Abstract
ntroduction: Analysis of linked health data can generate important, even life-saving, insights into populationhealth. Yet 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 AdministrativeData Research Network, NHS Digital, and the Secure Anonymised Information Linkage Databank.Bringing an interdisciplinary perspective, we identify key issues underpinning their challenges andsuccesses in linking health data for research. Results:We identify examples of uncertainty surrounding legal powers to share and link data, and around dataprotection obligations, as well as systemic delays and historic public backlash. These issues requireupdated official guidance on the relevant law, approaches to linkage which are planned for impactand ongoing utility, greater transparency between data providers and researchers, and engagementwith 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 tobe meaningfully advanced. This illustrates the scale and complexity of the challenge of health datalinkage, in the UK and beyond: a challenge which our case studies suggest no single organisation cancombat alone. Planned programmes of linkage are critical because they allow time for organisationsto address these challenges without adversely affecting the feasibility of individual research projects
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