UK research data resources based on primary care electronic health records: review and summary for potential users
Lara Edwards, James Pickett, Darren M Ashcroft, Hajira Dambha-Miller, Azeem Majeed, Christian Mallen, Irene Petersen, Nadeem Qureshi, Tjeerd van Staa, Gary Abel, Chris Carvalho, Rachel Denholm, Evangelos Kontopantelis, Ayoyemi Macaulay, John MacLeod
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.