In July 2022, I worked with Macey Murray and our colleagues across NHS England, UCL, HDR UK and the University of Oxford to set out the principles for how data provenance and healthcare systems data could be addressed for clinical trials manually across 2 important datasets.
Now we have published a new paper on semi-automating this process. This DEDICaTe proof-of-concept study focused on 4 important national datasets:
- Civil Registration of Deaths
- Hospital Episode Statistics
- Admissions
- Outpatients
- Critical care
The project team mapped the data flow from around the UK into NHS England’s data platforms, including the relevant processing rules, and how these datasets, where appropriate, would pass to approved researchers.
Together, this provides the necessary documentation and clarity for the datasets using a semi-automated approach – data can be updated and managed automatically, giving researchers access to up to date provenance information on relevant datasets. Find out more on the DEDICate website.
This is an exciting first step! The documentation needs regular review for updates, perhaps annually, and trial teams need to know how to access and use the documentation for their filing purposes.
If we expand this work to all national datasets held by NHS England for research, ideally including pathology and blood measurements, this would be a huge benefit to researchers. There would be a greater impact still if our colleagues across the UK that hold healthcare systems data mirrored this work. This is achievable – it’s not glamorous, but it is a critically important step that will reduce administrative burden, aid trust and transparency, and improve the overall delivery of clinical trials.
