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UK research data resources based on primary care electronic health records: review and summary for potential users

Edwards, Lara; Pickett, James; Ashcroft, Darren M; Dambha-Miller, Hajira; Majeed, Azeem; Mallen, Christian; Petersen, Irene; Qureshi, Nadeem; van Staa, Tjeerd; Abel, Gary; Carvalho, Chris; Denholm, Rachel; Kontopantelis, Evangelos; Macaulay, Ayoyemi; MacLeod, John

Authors

Lara Edwards

James Pickett

Darren M Ashcroft

Hajira Dambha-Miller

Azeem Majeed

Irene Petersen

Nadeem Qureshi

Tjeerd van Staa

Gary Abel

Chris Carvalho

Rachel Denholm

Evangelos Kontopantelis

Ayoyemi Macaulay

John MacLeod



Abstract

To describe the current landscape of UK electronic health record (EHR) databases and considerations of access and use of these resources relevant to researchers. Narrative review DATA SOURCES: Information was collected from the Health Data Research Innovation Gateway, publicly available websites and other published data and from key informants. Population-based open-access databases sampling EHRs across the whole population of one or more countries in the UK. We extracted and summarised published database characteristics and corroborated these with resource providers. Results were synthesised narratively. Nine large national primary care EHR data resources were identified and summarised. These resources are enhanced by linkage to other administrative data to a varying extent. Resources are mainly intended to support observational research though some can support experimental studies. There is considerable overlap of populations covered. Whilst all resources are accessible to bona fide researchers, access mechanisms, costs, timescales, and other considerations vary across databases. Researchers are currently able to access primary care EHR data from several sources. Choice of data resource is likely to be driven by project needs and access considerations. The landscape of data resources based on primary care EHRs in the UK continues to evolve. [Abstract copyright: Copyright © 2023, The Authors.]

Citation

Edwards, L., Pickett, J., Ashcroft, D. M., Dambha-Miller, H., Majeed, A., Mallen, C., …MacLeod, J. (2023). UK research data resources based on primary care electronic health records: review and summary for potential users. British Journal of General Practice Open (BJGP Open), https://doi.org/10.3399/BJGPO.2023.0057

Journal Article Type Article
Acceptance Date Jul 7, 2023
Online Publication Date Jul 10, 2023
Publication Date 2023-09
Deposit Date Aug 1, 2023
Journal BJGP Open
Print ISSN 2398-3795
Publisher Royal College of General Practitioners
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.3399/BJGPO.2023.0057
Keywords population level linked data, electronic health record, primary care databases
Public URL https://keele-repository.worktribe.com/output/524524