By Lesley Booth, Patient & Public Involvement Lead, Bowel & Cancer Research

Published: 20 November 2019

In April 2016 following a diagnosis of bowel cancer, I had to have my entire colon removed. It was a big surgery and whilst recovering I felt I needed to re-think my career. I saw a vacancy for Patient and Public Involvement (PPI) lead for Bowel & Cancer Research and thought ‘why not?’. Whilst I didn’t come from a charity background, having worked in higher education, I believed I had the skills to make it an impactful role - not only for me but for everyone I would work with. I knew that through PPI I could make a real difference to how research is conducted.

A patient’s perspective

Having a patient’s perspective has made a huge difference to my role. It means I can support patients who take part in our research from a profoundly empathetic stance. Unless you’ve lived with a condition you really don’t know what it’s like, but patients take comfort in knowing that I really do know! It also means I’m better equipped to advise and guide researchers through the research process.

A rewarding role

I’m passionate about education and love that my role enables me to foster educational opportunities between researchers and the public. It’s a great position to be in.

I regularly run focus groups and it’s truly rewarding to see, over the course of a day, groups of nervous patients transition into confident experts sharing their experiences and their thoughts on what needs to be achieved to make the research work. What’s more, I see the researchers really value the input of these groups!

It’s been a real pleasure to get to know so many new patients who give their time to help me in my role. I also love working with the bowel research community and getting to know so many dedicated health professionals who really do want to make a difference to our lives. I feel humbled to be part of this.

Growing the PPI community

I’ve helped create a vibrant community of 1,200 patients and researchers who feel that we are the first port of call for a range of research projects covering bowel disease areas. One of the great things is that I can connect patients with different disease pathways but similar symptoms which gives researchers new insights.

Our reputation in this area is growing and I’m delighted that researchers are increasingly understanding the very real value of meaningful patient involvement in research. A tangible example of this is that we are now being approached much earlier in the research process to provide consultation at study design level which illustrates an increased understanding of the value of patient experience to the entire research pathway.

Words of advice

Listen, listen and listen. We should all be listening to each other whether we are a health professional, researcher, patient, carer or family member - every one of us has a lot to learn from each other.

Ensuring PPI isn’t just tokenistic

Research is all about investigating and exploring new knowledge with a purpose, and it is the public that gives such research that purpose. Quality research cannot be delivered without the involvement of patients and the public. In the two years in my role I have seen that there has been increasing movement to ensure this is an accepted working practice and not just tokenistic. Patients and the public always offer unique and invaluable insights so that research is enriched by involving those it aims to help.