Helen uses her experience of cancer from both a patient and carer's perspective, as part of Your Involvement Network.
In the past few years,she's been a member of one of our patient sounding boards, supported our junior researchers with patient involvement at our junior Investigator Networking group event, and most recently has been one of the patient representatives in our Grand Challenge. Helen tells us what motivated her to take part and what her role involved.
What motivated you to get involved in Grand Challenge?
I know too well that early diagnosis is key to improving survival rates; that inequalities exist around treatment options and care pathways; that end of life care remains an area to address, as does survivorship; that we need more patients signing up for clinical trials. With increased public awareness around clinical research, we can really get to grips with these issues. Being part of the Grand Challenge was the icing on the cake for me - not only did I have the opportunity to hear what the challenges are but also to explore innovative solutions. I love influencing change and seeing the big picture.
Why do you think it was important to have patient representatives involved?
I provided a voice that represented the patient and the public. Patients and the wider public often have insights and expertise that complement and add value to the research. There is nothing as important as ensuring that the public voice is heard - so this was my role.
Patient and public involvement acts a key forum so that we can improve the quality and value of cancer research for patient benefit. I truly believe that we're none of us as smart as all of us, and collaboration underpins my ethos. Money doesn't solve problems; people do.
How would you describe your experience of being involved?
It was phenomenal. An element of surprise to me was the collective intelligence that was all brought to the agenda. I learnt so much from the other consumers on the panel and felt really privileged to work together. The other key thing for me was starting with blue sky thinking and shifting the mindset to forgetting about barriers.
One of the joys was the fact that we were all learning together and Cancer Research UK made no secret of this. It was a first for all of us - and our voices were as valued as the next person.