How researchers access data
When patient data is used for purposes beyond direct care, it’s important that there's a robust, trustworthy system in place to protect the data and ensure it's used in the right way.
We’re working to make sure governance for health data remains proportionate and consistent to allow legitimate research to continue.
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These changes are a positive step in principle, but implementation has been too slow and has restricted important research.
We’re calling for a consistent, robust legal framework that governs all research using patient data.
Current governance for researchers
Researchers work under strict rules stating what they can and can’t do with patient data.
- An independent advisory committee must approve a project before researchers are granted access to any patient-level data.
- The least amount of information necessary is given to researchers. In most cases, this means any identifying information is removed
- If researchers need to access identifiable patient information they must seek patients’ permission. If that’s not possible, the Confidentiality Advisory Group (CAG) will review the study before granting access.
- Under explanatory note 741, the Care Act 2014 explicitly states that data cannot be accessed solely for commercial purposes.
- Read our briefings and responses on improving the governance of health data:
- Response to consultation on protecting health and care information [PDF 79KB], August 2014
- Evidence on delays faced by researchers trying to access data [PDF 319KB], March 2015
- Joint response to consultation on draft terms of reference for ‘Independent Group Advising on the Release of Data' [PDF 400KB], August 2015
- Joint response to consultation on better use of data in government [PDF 141KB], April 2016
- The Medical Research Council has developed guidance and training materials for researchers and regulators working with health data.
- The National Institute for Health Research’s Health Data Finder helps researchers to find information about the UK healthcare data sets that are available for research.
If you have any questions, contact Natalie Banner: