Gut Reaction, the Health Data Research Hub for inflammatory bowel disease (IBD), was announced the winner of the Public and Patient Involvement and Engagement Award at Health Data Research UK‘s (HDR UK) annual Scientific Conference.
The Hub integrates data from multiple sources within a secure research resource that allows approved researchers to access data, whilst protecting the privacy of individuals.
Each year HDR UK awards prizes for excellence in health data research. This award celebrates best practice and innovation in public involvement and engagement, using criteria in line with the UK Standards for Public Involvement, across all aspects of research, infrastructure and service development, within HDR UK and beyond.
Involving patients in decision-making about how their data are used for patient or societal benefit has been central to the work of Gut Reaction. The team has worked closely with the Patient Advisory Committee to design and implement a sustainable model for data sharing for innovation in inflammatory bowel disease.
Watch Rosanna, patient lead for Gut Reaction, talk about how patient input has been core to the project:
Winners were selected by a panel of experts, and presented at the HDR UK Scientific Conference on Wednesday 14 December, 2022. HDR UK’s announcement stated:
“Patient and public involvement and engagement is essential to HDR UK’s work. We want the views and ideas of patients and public to be embedded into each stage of research, to ensure public data is used in a way that is transparent and trustworthy, and meaningfully improves lives.”
“With the support of Crohn’s & Colitis UK, Gut Reaction’s Patient Advisory Committee was formed at inception to facilitate patient involvement in planning and decision-making. Gut Reaction is now a well-established data resource supporting patient-centred research in inflammatory bowel disease.
“Of note, Gut Reaction has done a significant amount of work developing training materials to support patient involvement in health data research. The panel believes this to be an exceptional resource and a contribution to PPIE that will remain valuable well into the future.”
Gut Reaction, the Health Data Research Hub for Inflammatory Bowel Disease (IBD) is run by the NIHR BioResource. The Hub was initially established with funding from HDR UK and Office of Life Sciences (OLS) Industrial Strategy Challenge Fund (ISCF) and delivered in partnership by AIMES, Cambridge University Health Partners, Cambridge University Hospitals NHS Foundation Trust, Crohn’s & Colitis UK, Health Innovation East, Leeds Teaching Hospitals NHS Trust, Manchester University NHS Foundation Trust, Microsoft, Newcastle upon Tyne Hospitals NHS Foundation Trust, NIHR BioResource, Pennine Acute Hospitals NHS Trust, Privitar, Royal Devon and Exeter NHS Foundation Trust, Royal Liverpool and Broadgreen University Hospitals NHS Trust, Salford Royal NHS Foundation Trust, UK IBD Registry Ltd, University of Cambridge, University College London Hospitals NHS Foundation Trust, Western General Hospital, Edinburgh
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