Eastern AHSN and partners announced HDR UK Team of the Year

The sprint exemplar project integrated cloud-based patient data to aid rare disease research

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Published: 17th June 2020

The team behind the sprint exemplar project was awarded the accolade at an online awards ceremony by Health Data Research UK – the national institute for health data science – as part of their annual conference last night.

The judges were looking for collaborative and productive teams with exemplary team-working characteristics which bring together a highly-functional interdisciplinary and/or intersectoral team, with members from a range of career stages.

The sprint exemplar project was a remarkable partnership between multiple organisations from the NHS, academia and industry which delivered a unique hybrid cloud infrastructure to allow access to healthcare and genomic data of patients with rare diseases at scale.

Working with the NIHR BioResource and led by Professor John Bradley at Cambridge University Hospitals, the team focussed on integrating research data across three rare disease groups, supplemented by electronic patient record (EPR) data from five NHS trusts. In December 2019, the integrated and de-identified dataset was made available for analysis in a secure cloud research environment as part of an approved research study at the University of Cambridge.

The project was successfully delivered within just 10 months and created a proof of concept research resource with the potential to transform understanding of rare genetic disorders, drive improvements in diagnosis and management, and provide proof of principle for use in other diseases.

This model is now being developed and scaled to deliver Gut Reaction, the Health Data Research Hub for Inflammatory Bowel Disease (IBD). The long-term goal is to use this model to provide a world-class, multi-dimensional integrated data resource for research and innovation that is based on open data standards, protects the privacy of participants, and can be readily scaled and replicated for other disease areas.

Mark Avery, Director of Health Informatics at Eastern AHSN, said:

“It’s been fantastic seeing how the team came together and delivered so much in just 10 months. The project has shown how patients, academia, health services and industry achieve more working together than they do in isolation – each partner brought their own expertise and it couldn’t have been delivered without the amazing team ethic.”

Cambridge University Hospitals NHS Foundation Trust developed the initial sprint exemplar project application with Eastern AHSN, NIHR BioResource, AIMES, Privitar, and Microsoft.

Find out more

Partners in the rare diseases sprint project were: Cambridge University Hospitals, NIHR BioResource, Cambridge University Health Partners, Eastern Academic Health Science Network, AIMES, Privitar, Public Health England National Diseases Registries, Microsoft, the Wellcome Sanger Institute, Leeds Teaching Hospitals, Newcastle Hospitals, Royal Liverpool and Broadgreen University Hospitals, and the Royal Papworth Hospital. Find out more on the HDR UK website.

For the Gut Reaction, Health Data Research Hub for Inflammatory Bowel Disease (IBD) programme, the above team are joined by Crohn’s & Colitis UK and the UK IBD Registry. Find out more or visit: www.gut-reaction.org

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