I have Crohn’s disease, which, along with ulcerative colitis, is one of the main forms of inflammatory bowel disease (IBD). This disease affects over 500,000 people in the UK, is lifelong and currently has no cure. I was diagnosed fifteen years ago and since then my life has followed a pattern of flare ups, treatments and remission. This experience is typical for those of us with IBD, which makes it very difficult to get on with your life, or plan for the future, as you don’t know when you are going to be ill next. Crohn’s disease also affects every part of your life. For example, I had to give up my teaching career because I was missing so much term-time as a result of my illness. I have also been in hospital many times and had major surgery.
We know that everyone’s Crohn’s disease or ulcerative colitis is different, so there is no ‘one size fits all’ treatment. However, we also know that for certain individuals, offering particular treatments at an earlier stage can delay disease progression and allow patients to get on with their lives, with far fewer interruptions from their IBD. What we don’t know is why this is the case, so more research into this could really make a difference. Finding out which patients benefit most from a treatment, and why, can also lead to the development of new therapies. It would also avoid the trial and error experience that I had with different treatments over the years, some of which have left me with additional health issues.
Every time we go to the doctor or visit the hospital, we generate health data – for example data about our medications, symptoms, diagnostic tests and treatments. If we allowed this data to be brought together and used by researchers in a secure and controlled way, the information it provides could lead to improved understanding, diagnosis and treatments. Looking back, I can see that if researchers had been able to access and use my health data, I might have been offered more effective treatments, quicker. That’s one of the reasons I decided to become a patient representative for the Gut Reaction data hub.
Working with the health and genomic data that patients have given consent to use, will also enable clinicians to offer more personalised treatments and care. Many of us have more than one condition, often looked after by different health professionals in different places, and it is crucial that all this information is integrated to enable a more holistic view of a patient’s unique circumstances.
Finally, I am particularly optimistic about the future benefits that health data research offers young people. Although I am no longer a teacher, I know from my current work with young people that having a long-term health condition can lead to missing out on education, social life and can affect psychological health. IBD is commonly diagnosed during adolescence, so getting young patients onto the most effective treatments as quickly as possible could make a huge difference to their experience of Crohn’s disease or ulcerative colitis.
It makes sense to me that the data we routinely generate when we access health services is used to benefit current and future patients. However, we need to be sure that this data is treated with respect, kept secure, and that our privacy is protected. Being a patient representative helps me to feel reassured that these concerns are at the heart of the Gut Reaction hub’s strategy and that patient and public voices are being heard and integrated into this new and exciting area of health research.