This project will be led by the DataLoch team at the University of Edinburgh in collaboration with Public Health Scotland (PHS).
DataLoch is a service that curates health and social care data for 1.6 million people in South-East Scotland. Approved applicants receive de-identified data extracts via the National Safe Haven – a trusted research environment (TRE) managed by PHS Electronic Data Research and Innovation Service (eDRIS).
However, this TRE was designed primarily for clinical and academic researchers using traditional statistical software. It does not cater for other, ‘non-traditional’ researchers or innovators from different disciplines, including software developers, experts in artificial intelligence (AI) or those from third and private sector organisations.
This project explored the barriers to the use of TREs by non-traditional researchers from different disciplines and has delivered a prototype solution and user training module for DataLoch operating alongside the National Safe Haven in Scotland. The project investigated public perspectives around non-traditional user access to health and social care data, and produced a lessons learned report with recommendations for TREs across the UK based on the following questions:
- What is expected from ‘non-traditional’ TRE users – such as those from the third and private sectors – to be considered trustworthy and credible? What public concerns exist about their use of TREs? What user accreditation standards are required?
- What additional technical security is required from a TRE to support research and innovation projects from different disciplines or organisations?
- What additional information governance is required to support TRE access from non-traditional researchers?
Principal investigator: Professor Nicholas Mills, University of Edinburgh
Funded amount: £107,732
Project outputs
- Governance Recommendations for Non-Traditional Researchers in Trusted Research Environments (TREs) – Full report
- Governance Recommendations for Non-Traditional Researchers in Trusted Research Environments (TREs) – Summary report
- Public deliberations on access to health data by non-traditional researchers
- Public perspectives on the use of health data in research and innovation
Find out more about DARE UK’s programme of Sprint Exemplar Projects.
