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

Author:

Edwards LaraORCID,Pickett JamesORCID,Ashcroft Darren MORCID,Dambha-Miller HajiraORCID,Majeed AzeemORCID,Mallen ChristianORCID,Petersen IreneORCID,Qureshi NadeemORCID,van Staa TjeerdORCID,Abel GaryORCID,Carvalho ChrisORCID,Denholm RachelORCID,Kontopantelis EvangelosORCID,Macaulay AyoyemiORCID,Macleod JohnORCID

Abstract

BackgroundThe range and scope of electronic health record (EHR) data assets in the UK has recently increased, which has been mainly in response to the COVID-19 pandemic. Summarising and comparing the large primary care resources will help researchers to choose the data resources most suited to their needs.AimTo describe the current landscape of UK EHR databases and considerations of access and use of these resources relevant to researchers.Design & settingNarrative review of EHR databases in the UK.MethodInformation was collected from the Health Data Research Innovation Gateway, publicly available websites and other published data, and from key informants. The eligibility criteria were population-based open-access databases sampling EHRs across the whole population of one or more countries in the UK. Published database characteristics were extracted and summarised, and these were corroborated with resource providers. Results were synthesised narratively.ResultsNine 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, although some can support experimental studies. There is considerable overlap of populations covered. While all resources are accessible to bona fide researchers, access mechanisms, costs, timescales, and other considerations vary across databases.ConclusionResearchers 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.

Publisher

Royal College of General Practitioners

Subject

Family Practice

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