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Limitations for health research with restricted data collection from UK primary care

Strongman, H., Williams, R., Meeraus, W. , Murray-Thomas, T., Campbell, J., Carty, L., Dedman, D., Gallagher, A. M., Oyinlola, J., Kousoulis, A. & Valentine, J. (2019). Limitations for health research with restricted data collection from UK primary care. Pharmacoepidemiology and Drug Safety, 28(6), pp. 777-787. doi: 10.1002/pds.4765


UK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of restricting the scope of electronic health record (EHR) data collection on the ability to conduct research. The study estimated the consequences of restricted data collection on published Clinical Practice Research Datalink studies from high impact journals or referenced in clinical guidelines.

A structured form was used to systematically analyse the extent to which individual studies would have been possible using a database with data collection restrictions in place: (1) retrospective collection of specified diseases only; (2) retrospective collection restricted to a 6‐ or 12‐year period; (3) prospective and retrospective collection restricted to non‐sensitive data. Outcomes were categorised as unfeasible (not reproducible without major bias); compromised (feasible with design modification); or unaffected.

Overall, 91% studies were compromised with all restrictions in place; 56% studies were unfeasible even with design modification. With restrictions on diseases alone, 74% studies were compromised; 51% were unfeasible. Restricting collection to 6/12 years had a major impact, with 67 and 22% of studies compromised, respectively. Restricting collection of sensitive data had a lesser but marked impact with 10% studies compromised.

EHR data collection restrictions can profoundly reduce the capacity for public health research that underpins evidence‐based medicine and clinical guidance. National initiatives seeking to collect EHRs should consider the implications of restricting data collection on the ability to address vital public health questions.

Publication Type: Article
Additional Information: This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Publisher Keywords: bias; electronic health records; pharmacoepidemiology; primary care
Subjects: R Medicine > RA Public aspects of medicine
Departments: School of Health & Psychological Sciences > Midwifery & Radiography
Text - Published Version
Available under License Creative Commons Attribution Non-commercial.

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