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People power – how patients are making changes to research

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Responsible use of patient data is vital to advance research on a large scale. Now, a new data research project is putting patients at the centre.


You might have never heard of Crohn’s disease and ulcerative colitis, but you will know someone with these inflammatory conditions – they affect over 500,000 people across the UK. Symptoms include agonising pain, extreme tiredness and lifelong gut problems. There is no cure. They also cost the NHS billions to treat. Now, there is hope that a new approach to patient data will accelerate the development of better treatments.

Agents of change

Sarah Sleet, CEO at Crohn’s & Colitis UK says, “We see the impact of these conditions – disrupted education and work, relationships under strain, and emotional difficulties. Many people will go years cycling through drugs to see what works, hoping it stays working. For too many, radical surgery becomes the only option.”

The Crohn’s and colitis community now has the potential to turbo charge change through the most valuable commodity in research – their data.

Working with Health Data Research (HDR) UK, Gut Reaction is addressing this problem – bringing data together in a new and safe way.

Prof Miles Parkes

Stronger together

According to Prof Miles Parkes, Clinical and Academic Lead of Gut Reaction – the Health Data Research Hub for Inflammatory Bowel Disease, “The huge variation in outcomes experienced by patients results from the interplay between genetics and environmental factors. A key way to better understand this is to look at data from thousands of people – their DNA, physical characteristics, response to treatment. Currently data is kept in silos across the NHS and research centres making it impossible to see the full picture. Working with Health Data Research (HDR) UK, Gut Reaction is addressing this problem – bringing data together in a new and safe way.”

Managing the challenges patient data

Sleet says: “The opportunity for good from Gut Reaction is enormous but people rightly want to know how their data is used. With patient voices and power at the heart of Gut Reaction, this is more open and transparent than ever before.”

The power of people

Patients themselves have helped to design consent information because everyone should know exactly what they are signing up for. They’ve improved the thinking behind data access, underpinning it with principles people really care about. For example, marketing and insurance companies are out because data must be used for public benefit, not pure profit, and should not increase inequality.

“My life has been profoundly affected by Crohn’s and I am desperate to see better treatments,” says Rosanna Fennessy, Gut Reaction patient representative. “But not at any price. Gut Reaction is our chance to show that patients can set the rules for what is acceptable in the use of health data in research.”

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