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Curating a longitudinal research resource using linked primary care EHR data-a UK Biobank case study

Lookup NU author(s): Philip Darke, Dr Sophie Cassidy, Professor Mike Catt, Professor Roy Taylor, Professor Paolo MissierORCiD, Professor Jaume Bacardit



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association. Primary care EHR data are often of clinical importance to cohort studies however they require careful handling. Challenges include determining the periods during which EHR data were collected. Participants are typically censored when they deregister from a medical practice, however, cohort studies wish to follow participants longitudinally including those that change practice. Using UK Biobank as an exemplar, we developed methodology to infer continuous periods of data collection and maximize follow-up in longitudinal studies. This resulted in longer follow-up for around 40% of participants with multiple registration records (mean increase of 3.8 years from the first study visit). The approach did not sacrifice phenotyping accuracy when comparing agreement between self-reported and EHR data. A diabetes mellitus case study illustrates how the algorithm supports longitudinal study design and provides further validation. We use UK Biobank data, however, the tools provided can be used for other conditions and studies with minimal alteration.

Publication metadata

Author(s): Darke P, Cassidy S, Catt M, Taylor R, Missier P, Bacardit J

Publication type: Article

Publication status: Published

Journal: Journal of the American Medical Informatics Association : JAMIA

Year: 2022

Volume: 29

Issue: 3

Pages: 546-552

Print publication date: 01/03/2022

Online publication date: 13/12/2021

Acceptance date: 23/11/2021

Date deposited: 24/02/2022

ISSN (electronic): 1527-974X

Publisher: Oxford University Press


DOI: 10.1093/jamia/ocab260

PubMed id: 34897458


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