Data is transforming health and social care, enabling life-changing discoveries, advancing healthcare services and improving lives. Yet health data providers face challenges in extracting and linking this complex data and safeguarding its safe release for research.
Risk assessments are key to ensuring that providing researchers with access to data does not pose privacy risks – such as by containing identifiable information – and that people’s personal records are processed correctly. However, currently, these governance processes are ad-hoc, manual and time consuming, and may prohibit data release, ultimately limiting new health and social care innovation.
The SARA project will focus on delivering semi-automated tools to improve two areas of risk assessment and monitoring:
- data provenance (metadata that describes the origins, actions performed and agents involved in data creation and transformation) by improving the trustworthiness of how we bring data in and then process and link it to ensure it is compliant for research; and
- privacy assessment by minimising the risk of identifiable information in clinical free-text records (for example, GP letters and discharge summaries).
Public involvement and engagement are central to the project, ensuring risks are properly identified and addressed and that methods are transparent and understandable.
The project’s collaborative approach will produce an implementable toolkit for all data providers across the UK. This project offers significant benefits for data audit and release, improving consistency between organisations and access time for researchers, and promoting access to data that has not been feasible before.
Principal investigator: Dr Arlene Casey, University of Edinburgh
Project partners: University of Edinburgh, University of Aberdeen, Greater Glasgow and Clyde (West of Scotland) Safe
Haven, University of Sussex, Public Health Scotland
Funded amount: £383,147