We involve patients, carers and others affected by cancer across our work – we call them Consumers. At any one time, up to one hundred Consumers will be involved in our activities; making contributions to the setting of our strategy and, through involvement in NCRI activities, shaping actions at national level as experts in the experience of cancer.
We recently recruited new Consumers to all of our Clinical Research Groups. The response we had to the call for applications was amazing, and greater than any year previously. After interviews, we successfully recruited 9 new Consumers to support us in all of our work.
We spoke to one of the Consumers we recruited at this time last year, Lesley Stephens, about her involvement so far, and why the role of Consumers in our work is so important.
How did you hear about the opportunities to volunteer at the NCRI?
I follow Cancer Research UK on Twitter and saw an advert via them, for patients to get involved in NCRI Clinical Studies Groups (CSGs). I had very little idea what the CSGs did, but I was keen to use my experience of being a patient on a clinical trial to good use.
What area of the NCRI’s work have you been most inspired by and what are you most looking forward to being involved with?
I have been amazed at the number of trials that the Breast Cancer CSG maintain, ensuring that there is a balanced portfolio of research. And I have been inspired by the clear commitment and passion of all those involved in making the patient experience a good one.
I’m most looking forward to getting involved in trials for metastatic patients – I am one myself and have personally benefitted from research into the disease. Simply put, I wouldn’t be here without the efforts of the many researchers and clinicians moving science forward on behalf of us patients.
Why do you think Patient and Public Involvement in research is important?
Patients provide a unique perspective on research, ‘humanising’ what can sometimes seem to be a fairly clinical pathway. We are necessary to ensure that scientists are asking the right research questions, and that their trial designs fully take account of the patient experience. We are there to remind the researchers that there is a person at the end of the process, hoping to get benefit from what the research is doing to their bodies.
What do you hope your experiences will contribute to the NCRI’s work?
I hope I can help encourage more people to take part in research, and boost recruitment to NCRI trials. I also hope that I can help to ensure that the communication of trial progress and results back to patients is timely, in plain English and relevant.
Photo by Richard Clyborne of Music Strive