Published: 10 December 2019

Neil Barker was diagnosed with Crohn’s disease in 1993 and then later in 2003 – at 40 years old – he was diagnosed with stage two bowel cancer. In this blog Neil explains how he got involved with research and shares his experiences as an involved patient.

How did I get involved?

It really was very simple. A year ago I saw a tweet from Bowel & Cancer Research asking people to join their patient and public involvement meeting for a bowel screening device. I attended and must have made a useful contribution as I was asked to join their Patients and Research Together (PaRT) programme.

All that was required from me was an open mind, an interest in research, and wanting to contribute and to meet the criteria for the research being conducted. For example, having an ileostomy made me want to get involved with an early stage discussion on what a ‘stoma valve’ might look like and what it could do. This is real blue sky thinking and a great opportunity to join with fellow patients to give the researchers some ‘end user’ ideas.

What activities have I taken part in?

LOTS! I’ve joined consultations on research ideas; from a bowel cancer screening device to a cosmetic product to hide a stoma bag and ‘accessorise’ it! I’ve been a Bowel & Cancer Research representative on the National Bowel Cancer Audit, joined a trial to develop a new test to track the progression of Crohn’s disease, and spoken at the annual Big Bowel Event, a patient and researcher conference.

I’ve also had tours of the labs at the National Bowel Research X Centre and Centre of the Cell at Queen Mary University of London where I saw first-hand some amazing research in progress and spoke with brilliant scientists who explained their work in layman’s terms.

I truly enjoy the variety of opportunities to participate and find it fulfilling to make a contribution that the charity values.

Why is it important to get involved in research?

Surely, it’s our duty to play our part today to improve someone else’s tomorrow. Only by supporting this endeavour will medical science evolve. Not all research will change lives but even if it doesn’t it will pave the way for research which does.

Ask yourself can I contribute something and add value? If yes, just do it! The work is varied, interesting and fun.