Health Data Research Hub for IBD creates new animation
Today, Gut Reaction, the Health Data Research Hub for Inflammatory Bowel Disease (IBD) launches a new animation to explain how patient data is used to accelerate research into Crohn’s Disease and Ulcerative Colitis.
The project brings together health data in a secure environment to support ground-breaking research into IBD. This animation has been created to help people understand why health data research is so important and reassure people that their data will be safe and secure.
There is huge potential to changes lives through health data research to further our understanding of Crohn’s and Colitis and to improve care. However, patients may have questions about whose data we are using, who might have access to their data and for what purpose, and how their data is kept secure. Being transparent - and keeping data safe and only using it for the good of health care - is critical.
Gut Reaction aims to build on the high-quality health data in the NIHR IBD BioResource by combining it with ‘real-world’ data from participating NHS hospitals and the IBD Registry. This will allow researchers to use the pooled data to support important research into IBD.
The animation shows the journey Ben, a patient, goes on when taking part in Gut Reaction. And how his data is used, along with thousands of other peoples, de-identified in the process.
The animation has been created collaboratively with Gut Reaction partners, including researchers, clinicians and most importantly patients. Members of the Gut Reaction Patient Advisory Committee have been involved throughout the process.
Sarah Sleet, CEO at Crohn’s & Colitis UK says, “The use of patient data invites questions, and rightly so – patient data is sensitive. Through Gut Reaction, we want patients to be actively involved in how and why their data is used. The project is working with the Crohn's and Colitis community to highlight how patient data is being used for good, and the huge opportunities this can lead to. Patient data is vital for improving individual care and care across the NHS.”
Victoria King who sits on the Gut Reaction Patient Advisory Committee says, “I was so overwhelmed by the final video it’s amazing. It helped me explain the project to my dad in a simple way. You might have some concerns about your data being used in research, but data really can change things for us.”
Mark Avery, Director of Health Informatics, said: "Intelligent and ethical use of patient data is vital to improving health and care. Maximising benefit means working in partnership between the NHS, and researchers, charities and industry in way that is fair, transparent and open.
"Patients enrolled in the NIHR BioResource who have given their permission of their health data to be used for research are actively involved in how and why their data is used. This animation has been put together with input from patients to illustrate how patient data is being used across Gut Reaction, the Health Data Research Hub for Inflammatory Bowel Disease."