Focus on: gut reaction Transforming our understanding ofinoammatory bowel disease Mark Avery, Director of Health Informatics at Eastern AHSN and Cambridge University Health Partners (CUHP), discusses how data science is paving the way for more effective inflammatory bowel disease treatment Advances in genomics and techniques for understanding someones genetic information are allowing us to move away from the traditional trial and error approach to treating diseases. By better understanding conditions and the genetic factors that determine a treatments effectiveness we can find the most appropriate way to get the best and quickest outcomes for patients. Understanding how to apply genetic information to clinical decision-making requires complex analysis to process and interpret data on genetics, disease progression (including diagnostics), lifestyle, treatment and outcomes. Insights may then be used to deliver more personalised treatments while keeping patient data safe and non-identifiable by researchers. Building a secure data environment In 2019, we successfully secured funding from Health Data Research UK (HDR UK) to deliver a proof of concept that the data of patients with rare diseases could be effectively de-identified and made available for analysis in a secure cloud research environment. This was successfully delivered as a pilot project (Sprint Exemplar: Cloud-based integration of patient data to aid rare disease research), focusing on the data of around 1,600 patients. Following the success of the initial pilot, Eastern AHSN convened partners to successfully secure a further 5m from HDR UK to develop Gut Reaction the Health Data Research Hub for Inflammatory Bowel Disease (IBD). The hub builds upon the learning from the sprint pilot to integrate data from multiple sources and create a secure research resource that allows approved researchers to access data, while protecting the privacy of individuals. Gut Reaction is being delivered as a collaboration of 17 organisations and is led by Prof John Bradley at the Cambridge University Hospital NHS Foundation Trust, which hosts the NIHR BioResource, a ... this initiative will transform our understanding of inflammatory bowel disease national platform that draws together the data of thousands of patients who have - Dr Miles Parkes, Clinical and Academic Lead for Gut Reaction understand the causes of inflammatory bowel disease and support the selection already provided consent for their health records to be retrieved and used for medical research. Weve also worked closely with Crohns & Colitis UK to ensure that public and patient involvement and engagement is central to how we work and we can understand and address any concerns patients may have about the use of data for research. By building a secure environment to host this data, the Gut Reaction team is creating an unprecedented and world-leading resource to help researchers better and development of better, more personalised treatments. At Eastern AHSN, we believe that citizens, academia, health services and industry will achieve more working together than they will in isolation and this project is a great example of our collaborative approach. We are grateful to all our partners on this hub including Cambridge University Hospitals and the NIHR BioResource, Crohns & Colitis UK, the UK IBD Registry, Wellcome Sanger, AIMES, Privitar and Microsoft. We are now in the process of collating data, selecting the best research use cases to focus on initially. Gut Reaction the Health DataResearchHubforInoammatory Bowel Disease Dr Miles Parkes, Clinical and Academic Lead for Gut Reaction says: By working together with patients, industry, academia and the health service this initiative will transform our understanding of inflammatory bowel disease. Excitingly it has the potential to turn a severe disease into a mild disease and we hope to deliver a sustainable model that could be replicated across multiple other disease areas. A patient-centred approach to data C Sarah Sleet, Chief Executive Officer at Crohns & Colitis UK outlines how patients voices are central to the Gut Reaction programme rohns disease and ulcerative colitis are estimated to affect one in every 130 people in the UK (more than 500,000) and cost UK health budgets approximately 1.5 billion each year.1 Treatment involves steroids, immunosuppressants and antibody therapies, but results are variable and it is unclear which is best for a patient. As a result, there is an urgent need to better understand why patients respond differently to treatments in order to improve patient outcomes and reduce costs. For more than 40 years, Crohns & Colitis UK has been leading the drive to Sarah Sleet from Crohns & Colitis UK talks about Gut Reaction increase knowledge of the causes and best treatments of Crohns disease and ulcerative colitis. We are a proud partner in Gut Reaction and Im excited by the potential to support research that helps treat patients with really life-changing conditions in a much better way. Data science has enormous opportunities and the information that patients provide is of immense value. It is only by cultivating active and sustained collaboration between health service providers, researchers, patients and the public that we can develop and maintain public trust in the responsible use of healthcare data. Our approach is based on four principles: 1 Beclearaboutthebenelts Describing clearly how the data used will contribute to public benefit is critical to patients agreeing that their data may be used for health research any sense of data being used for any other purpose will drive patients away. We have a defined goal and can articulate how patients are key to achieving it. 2 Transparency People are generally happy for the NHS to access and use patient-level data for public benefit reasons other than the individuals direct care. However, they are more hesitant about commercial organisations having access to this data.2 We have been proactive in engaging our Patient Advisory Committee in discussions about how organisations can apply for access to data, the process by which decisions will be made, and the conditions that need to be satisfied for access to be approved. 3 Security Hamilton et al., (2008).Prevalence and phenotype of IBD across primary and need to know that their information is safe and only accessible to researchers for approved studies. One of our Patients secondary care: implications for colorectal in Gut cancer surveillance. BMJ:partners Gut [online]. 67: Reaction is specialist data privacy firm Privitar, which holds the national contract with NHS Digital to develop A67. https://doi.org/10.1016/S0016the NHS-wide De-ID solution. Another partner, AIMES, is a trusted aggregator of NHS Data working within the NHS firewall 5085(18)32221-2 1 (HSCN network), and Microsoft help ensure we have world-class data security for our data research environments. NHS Health Research Authority., (2019). Sharing anonymised patient-level data where there is a mixed public and private Empowering to guide and decide benefit - a new report [online]. NHS Health Research Authority. The project Patient Advisory Committee (PAC) is independently facilitated by Crohns & Colitis UK and is central to the Gut [Viewed 19th June 2020]. Available Reaction programme. The PAC has been actively involved in critical discussions concerning data governance, consent and from https://www.hra.nhs.uk/about-us/newsupdates/sharing-anonymised-patient-leveldata access request review and approval processes. All partners are committed to ensuring that patient views play a key role data-where-there-mixed-public-and-privatebenefit-new-report/ 2 4 References Share this article 5m grant for new Gut Reaction Health Data Research Hub Find out more about Gut Reaction at EasternAHSN.org