Agreement and utility of coded primary and secondary care data for long-term follow-up of clinical trial outcomes
Significant discrepancies according to data sources were observed in recording of secondary care outcomes. Investigators should be cautious when choosing which data source(s) to use to measure outcomes in trials. Future work on linking participant-level data across healthcare settings should consider the variations in diagnostic coding practices. Standardised definitions for outcome measures when using healthcare systems data and using data from different data sources for cross-checking and verification should be encouraged.
Authors
- Nicholas Jones (ORCID: https://orcid.org/0000-0002-0352-3785)
- Simon de Lusignan (ORCID: https://orcid.org/0000-0002-8553-2641)
- Richard Hobbs (ORCID: https://orcid.org/0000-0001-7976-7172)
- Ariel Wang (ORCID: https://orcid.org/0000-0001-5360-9993)
- James P Sheppard (ORCID: https://orcid.org/0000-0002-4461-8756)
- Anna Seeley (ORCID: https://orcid.org/0000-0001-5354-5889)
- Matthew R. Sydes (ORCID: https://orcid.org/0000-0002-9323-1371)
- Richard J. McManus (ORCID: https://orcid.org/0000-0003-3638-028X)
- Marney Williams
Institutions
- Brighton and Sussex Medical School (GB)
- John Radcliffe Hospital (GB)
- University of Oxford (GB)
- MRC Clinical Trials Unit at UCL (GB)
- Health Data Research UK (GB)
- University College London (GB)
Publication Details
- Journal
- BMC Medical Research Methodology
- Published
- 2025-06-07
- DOI
- https://doi.org/10.1186/s12874-025-02606-1
- Citations
- 2
- Primary Topic
- Advanced Causal Inference Techniques
- Type
- article
- Field-Weighted Citation Impact
- 5.26
Funders
- National Institute for Health and Care Research
- British Heart Foundation
- Curtin University of Technology
- Oxford Health NHS Foundation Trust
- NIHR School for Primary Care Research