Gut Reaction - The Health Data Research Hub for Inflammatory Bowel Disease

"Crohn's Disease and Ulcerative Colitis are the main forms of IBD. They cause debilitating symptoms affecting 0.78% of the UK population (500,0001 people), and costing UK health budgets approximately £1.5 Billion2 each year. Treatment is with steroids, immunosuppressants and antibody therapies, but results are variable. Over 70% of patients with Crohn’s and 15% with colitis require major surgery3. There is an urgent need to better understand why patients respond differently to treatments in order to improve outcomes and reduce costs.
Recent advances in clinical imaging, pathology, and genomic technologies have produced remarkable progress in understanding IBD. However, the power of these technologies cannot be clinically realised until these data can be combined and used in a meaningful way.
Our DIH will integrate data from multiple sources and create a secure research resource that allows approved researchers to access data, whilst protecting the privacy of individuals.
Patient and public involvement is key to our success. 25,000 IBD patients have already provided consent for their health records to be retrieved and used for medical research. Working together, we will transform our understanding of IBD, drive improvements in diagnosis and treatment, and deliver a data framework to reproduce in other disease areas."

"The purpose of our proposed Hub is to integrate genomic data with structured phenotypic data and previously inaccessible routinely collected longitudinal healthcare data from a large cohort of patients recruited to the NIHR BioResource with the common immune mediated diseases Crohn’s disease and ulcerative colitis (collectively inflammatory bowel disease or IBD). The output will be a world-class, multi-dimensional integrated data resource for research and innovation; using a model based on open tools and data standards that could readily be scaled and replicated for other disease areas.
Disease Focus: Why Inflammatory Bowel Disease (IBD)?
IBD is common, affecting 0.78% of the population, and exacts substantial morbidity, frequent need for major surgery, and healthcare cost. Treatments increasingly focus on (expensive) antibody therapies, but responses vary substantially for poorly understood reasons. Many new IBD therapeutics are in development.
Organisations involved: Building on the early successes of our Sprint Exemplar Innovation Project, our collaboration is between multiple NHS sites, academia and industry (listed in 1.1.2 above). Working in partnership with patients and the public, the UK IBD Registry and Crohn’s & Colitis UK, we will develop methodologies to link data assets from more than 25,000 patient participants of the NIHR IBD BioResource who have provided consent to access their medical records for research, and are undergoing genome-wide profiling.
These participants are the cornerstone of our proposed Hub. Their detailed phenotype data is already captured and hosted at AIMES, a trusted aggregator of NHS data. Here it will be combined with:
Digital pathology, diagnostic reports and images direct from NHS Trusts (ten sites initially)
Health Episode Statistics (HES) from NHS Digital
IBD Registry data
Whole exome sequence data from the Wellcome Sanger Institute

Services provided: Our goal is to facilitate research that will benefit patients by providing:
production grade’' data and interoperability between platforms
advanced data storage and analytical environments for managing multi-dimensional data at scale
methods that support the highest standards of data discoverability, security, anonymisation andgovernance
meta-data to the HDRUK National Innovation Gateway, to support discoverability and facilitateaccess.

Exemplified by our partnership with AIMES (ISO27001 DSPTK level 2) and Privitar, as appointed by NHS Digital to develop national ‘De-ID’ solution, we will demonstrate the highest standards of data governance and, using the processing capability of Microsoft Azure, provide a scalable and replicable model for other NHS data assets."