Poster ID
P-21
Poster Title
Trusted Environments, Ethics & Engines: How HDR UK Streamlines the Health Data Research Journey
Authors
Wendi Bacon, HDR UK
Andy Rae, University of Nottingham
Andy Yates, HDR UK
Christian Cole, University of Dundee
Emily Jefferson, DARE UK
Jim Smith, University of the West of England
Michelle Amugi, DARE UK
Neil Postlethwaite, HDR UK
Peter W Harrison, HDR UK
Philip Quinlan, University of Nottingham
Rachel Brophy, HDR UK
Sangya Pundir, HDR UK
Simon Thompson, University of Swansea
Stephen Lavenberg, HDR UK
On behalf of:
• HDR UK Technology Team (https://web.prod.hdruk.cloud/en/about/meet-the-team)
• HDR UK Legal, Trust, and Ethics Team (https://ukhealthdata.org/trust-and-transparency/safeguards/)
• HDR UK Federated Analytics Team (https://federated-analytics.ac.uk/the-team/)
• SACRO Team (https://dareuk.org.uk/trevolution/semi-automated-checking-of-research-outputs-and-support-for-ai-sacro/)
• SATRE Team (https://dareuk.org.uk/trevolution/standardised-architecture-for-trusted-research-environments-satre/)
Andy Rae, University of Nottingham
Andy Yates, HDR UK
Christian Cole, University of Dundee
Emily Jefferson, DARE UK
Jim Smith, University of the West of England
Michelle Amugi, DARE UK
Neil Postlethwaite, HDR UK
Peter W Harrison, HDR UK
Philip Quinlan, University of Nottingham
Rachel Brophy, HDR UK
Sangya Pundir, HDR UK
Simon Thompson, University of Swansea
Stephen Lavenberg, HDR UK
On behalf of:
• HDR UK Technology Team (https://web.prod.hdruk.cloud/en/about/meet-the-team)
• HDR UK Legal, Trust, and Ethics Team (https://ukhealthdata.org/trust-and-transparency/safeguards/)
• HDR UK Federated Analytics Team (https://federated-analytics.ac.uk/the-team/)
• SACRO Team (https://dareuk.org.uk/trevolution/semi-automated-checking-of-research-outputs-and-support-for-ai-sacro/)
• SATRE Team (https://dareuk.org.uk/trevolution/standardised-architecture-for-trusted-research-environments-satre/)
Abstract
Who are we?
Health Data Research UK (HDR UK) is the UK’s national institute for health data science. We enable researchers, scientists and healthcare professionals to identify, understand and overcome the great healthcare challenges of our age through data. As a non-profit organisation, we connect academia, government, industry and the public across all four nations of the UK.
How do we work?
As a trusted and independent institution, we are uniquely positioned to convene communities to agree standards and roll out practices nationally. Collectively, we are streamlining the researcher journey by combining community driven standards with enterprise-level technology platforms that enable trustworthy, efficient, and scalable access to sensitive data.
Selected Frameworks & Guidelines
· SATRE: Standardised Architecture for Trusted Research Environments (TREs): An open framework of community-agreed key components of a TRE
· SACRO: Semi-Automated Checking of Research Outputs: Both a framework and software for assessing outputs as ‘safe’
· SafeGUARDS: principles for ethical, transparent and equitable governance and use of data
· Data Access Transparency Standards
· Five Safes Data Access Request application form
· Data Use Register transparency standard
· Data Access Agreement template
· Guidance for TREs assessing safe people and organisations
Selected Technology
· Health Data Research Gateway: discovery portal for UK health and health-related datasets and associated sharable resources, with a standardised data access request process.
· Cohort Discovery Service: enables federated, real-time queries to estimate cohort sizes across multiple pseudonymised datasets
· Bunny: underpins the Cohort Discovery service by enabling privacy-preserving querying of OMOP databases
· K8TRE: a SATRE-compliant, Kubernetes-native Trusted Research Environment (TRE) that can be deployed to any cloud-provider as well as on-prem infrastructure
· Safe People Registry: streamlines ‘safe people’ validations for researchers accessing sensitive data.
· Dementia Trials Accelerator: platform for advancing the inclusion of individuals in clinical trials
Together, we build reproducible, scalable models and frameworks to facilitate secure data research at a national and international level, with ample opportunities for further GA4GH implementation.
Health Data Research UK (HDR UK) is the UK’s national institute for health data science. We enable researchers, scientists and healthcare professionals to identify, understand and overcome the great healthcare challenges of our age through data. As a non-profit organisation, we connect academia, government, industry and the public across all four nations of the UK.
How do we work?
As a trusted and independent institution, we are uniquely positioned to convene communities to agree standards and roll out practices nationally. Collectively, we are streamlining the researcher journey by combining community driven standards with enterprise-level technology platforms that enable trustworthy, efficient, and scalable access to sensitive data.
Selected Frameworks & Guidelines
· SATRE: Standardised Architecture for Trusted Research Environments (TREs): An open framework of community-agreed key components of a TRE
· SACRO: Semi-Automated Checking of Research Outputs: Both a framework and software for assessing outputs as ‘safe’
· SafeGUARDS: principles for ethical, transparent and equitable governance and use of data
· Data Access Transparency Standards
· Five Safes Data Access Request application form
· Data Use Register transparency standard
· Data Access Agreement template
· Guidance for TREs assessing safe people and organisations
Selected Technology
· Health Data Research Gateway: discovery portal for UK health and health-related datasets and associated sharable resources, with a standardised data access request process.
· Cohort Discovery Service: enables federated, real-time queries to estimate cohort sizes across multiple pseudonymised datasets
· Bunny: underpins the Cohort Discovery service by enabling privacy-preserving querying of OMOP databases
· K8TRE: a SATRE-compliant, Kubernetes-native Trusted Research Environment (TRE) that can be deployed to any cloud-provider as well as on-prem infrastructure
· Safe People Registry: streamlines ‘safe people’ validations for researchers accessing sensitive data.
· Dementia Trials Accelerator: platform for advancing the inclusion of individuals in clinical trials
Together, we build reproducible, scalable models and frameworks to facilitate secure data research at a national and international level, with ample opportunities for further GA4GH implementation.