Health Data Linkage for Public Interest Research in the UK: Key Obstacles and Solutions

Main Article Content

Miranda Jane Mourby
James Doidge
Kerina H Jones
Ruth Gilbert
Stergios Aidinlis
Hannah Smith
Jessica Bell
Peter Dutey-Magni
Jane Kaye

Abstract

Introduction
Analysis 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.


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. Bringing an interdisciplinary perspective, we identify key issues underpinning their challenges and successes in linking health data for research.


Results
We 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.


Conclusions
Health 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.

Article Details

How to Cite
Mourby, M. J., Doidge, J., Jones, K. H., Gilbert, R., Aidinlis, S., Smith, H., Bell, J., Dutey-Magni, P. and Kaye, J. (2019) “Health Data Linkage for Public Interest Research in the UK: Key Obstacles and Solutions”, International Journal of Population Data Science, 4(1). doi: 10.23889/ijpds.v4i1.1093.

Author Biographies

James Doidge

1. Great Ormond Street Hospital Institute of Child Health and UCL Institute of Informatics, 222 Euston Road, London NW1 2DA, UK

2. Intensive Care National Audit & Research Centre, 24 HighHolborn, London WC1V, UK

Jessica Bell, Centre for Health, Law and Emerging Technologies, University of Oxford, Ewert House, Oxford, OX2 7DD, UK. 2. Centre for Health, Law and Emerging Technologies, Melbourne Law School, Level 9, 185 Pelham Street, University of Melbourne, Victoria 3010, Australia

Centre for Health, Law and Emerging Technologies, Melbourne Law School, Level 9, 185 Pelham Street, University of Melbourne, Victoria 3010, Australia

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