Full project title: Setting standards to maximise the scientific potential of primary care record linage in longitudinal studies
About the research
Linking to Primary Care records is the ‘holy grail’ of biomedical linkage strategies, given that approximately 80% of patient interactions with the health service are within the setting of primary care (GP, community pharmacy, dental and eye health services). Linkage to primary care electronic patient records (EPRs) is constrained by the requirements on their governance and also technical complexities relating to the extraction, processing and interpretation of the data. These issues are heightened by the fact that EPRs are held and owned by thousands of individual General Practices across the UK, rather than being centralised in a single national repository. Despite these challenges, a small number of cohort studies have successfully extracted large proportions of their cohort’s EPRs using a variety of approaches.
This work package seeks to pool the experience, understanding and contacts gained by those studies with success in linking primary care records and study data, in order to help CLOSER, and other UK, longitudinal studies overcome technical barriers to achieving linkage and optimise their research potential. The project will run a series of workshops and write a position paper focussing on data science issues rather than governance issues.
Andy Boyd (ALSPAC, University of Bristol)
- MRC National Survey of Health and Development
- Avon Longitudinal Study of Parents and Children
- Millennium Cohort Study
- Born in Bradford
- UK Biobank
- Baby Biome
- Four workshops, moving from small group discussions, through a academic/NHS/industry workshop to a CLOSER Knowledge Exchange Workshop to disseminate insights.
- Position paper setting out the findings of the project’s core expert group which outlines a framework for the extraction of electronic patient records and how these could be used in longitudinal studies.
- Reference document listing key contacts and useful references for research in this area.
Please note: all outputs are subject to feasibility and may change as the project develops.
Read about other CLOSER data linkage projects.