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

Abstract

Objectives To describe the current landscape of UK electronic health record (EHR) databases and considerations of access and use of these resources relevant to researchers.

Design & setting 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.

Eligibility criteria Population-based open-access databases sampling EHRs across the whole population of one or more countries in the UK.

Data extraction and synthesis We extracted and summarised published database characteristics and corroborated these with resource providers. Results were synthesised narratively.

Results 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.

Conclusion 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.

Citation

Edwards, L., Pickett, J., Ashcroft, D. M., Dambha-Miller, H., Majeed, A., Mallen, C., Petersen, I., Qureshi, N., van Staa, T., Abel, G., Carvalho, C., Denholm, R., Kontopantelis, E., Macaulay, A., & MacLeod, J. (2023). UK research data resources based on primary care electronic health records: review and summary for potential users. BJGP Open, 7(3), Article 0057. 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: Jul 21, 2023
• Publicly Available Date: Jul 26, 2023
• Journal: BJGP Open
• Electronic ISSN: 2398-3795
• Publisher: Royal College of General Practitioners
• Peer Reviewed: Peer Reviewed
• Volume: 7
• Issue: 3
• Article Number: 0057
• DOI: https://doi.org/10.3399/bjgpo.2023.0057
• Keywords: Electronic health records; primary care databases; population level linked data; population; primary health care
• Public URL: https://nottingham-repository.worktribe.com/output/23218922
• Publisher URL: https://bjgpopen.org/content/7/3/BJGPO.2023.0057
• PMID: 37429634