Patients shaping research – an interview with the founder of IBDRelief

Seb set up in 2015, after living with ulcerative colitis for 7 years. We spoke to him about life with a chronic bowel disease, how he helps support and advise fellow patients, and how people living with IBD can help shape the development of future treatments:

Can you give us a short biography about you & your experiences?

I was diagnosed with ulcerative colitis in 2008. I’d never heard of it before that point and was naive as to how it would affect my life. I started off taking corticosteroids to curb my constant flares – they were very effective but I quickly became steroid dependent. After making lots of lifestyle changes I eventually managed to stop taking steroids and reach clinical remission. During this time I learned a lot more about IBD and started to feel empowered by the knowledge I had to feel more in control of my health.

Every patient deserves to feel this way and at the end of 2015 I set up IBDrelief. Our main goal is to better educate patients about their condition and improve their quality of life. Since the website launched it’s been visited by over 1.4m people from 209 different countries. I also now get regular opportunities to speak at health events and conferences, work with researchers conducting studies into IBD and mentor pharmaceutical executives.

If there’s one thing you want people to know about bowel disease – what would it be?

That it can affect every part of your life and body, not just your bowels. In the past I’ve suffered with all manner of other manifestations associated with my IBD – including joint and muscle pains, fatigue, mental health issues, mouth ulcers, bad teeth and eye problems.

What does ‘successful’ research look like – and what would it mean for you?

In general terms, I think successful research is research that will improve the quality of life for patients. But, to achieve properly it’s really important that patients are getting involved in research.

The first thing that many people think of when they hear the word research is being a ‘lab rat’ testing out new treatments, however this is only one, very small aspect of research. There are so many other ways patients can get involved.

Personally I’ve taken part in many pieces of research, both as a participant and in the co-design of research. As a participant I’ve taken countless surveys, been interviewed by researchers and given blood. Co-design has involved sitting on steering groups and working with researchers to make sure the research they are doing is patient-friendly and will deliver outcomes that will benefit patients.

What are your hopes and fears for bowel disease research?

I hope that the involvement of patients, from the very inception of a piece of research, continues to grow and that researchers see the value in this. I also hope that more research is carried out looking at how patients’ quality of life can be improved while more treatments or a cure are sought.

My fears are that vital research funds are spent on looking into things that don’t benefit patients, due to lack of patient involvement in research design.

Why do you think someone should support the Bowel Disease Research Foundation?

Research is hugely important in advancing treatment and knowledge about bowel disease. It’s also important to help patients live a better quality of life and achieve their full potential.