Health Data Linkage for UK Public Interest Research: Key Obstacles and Solutions.
Miranda Jane Mourby, James Doidge, Kerina H Jones, Stergios Aidinlis, Hannah Smith, Jessica Bell, Ruth Gilbert, Peter Dutey-Magni, Jane Kaye
Int J Popul Data Sci | Published : 2019
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 d..View full abstract