This article is more than 1 year old
Knowing me, knowing you with Claire Walter: "The power of lived experience cannot be underestimated"
Hi Claire, can you tell us about your role at the Trust?
I use community insights to develop partnerships with other organisations who may have similar objectives or community needs. In particular, we are interested in partnerships with charities and industry (such as pharmaceutical or biotech companies). We can offer industry paid-for services that include coordination of PPIE activity, access to funding streams and research networks, valuable data through the UK CF Registry and support in setting up trials through the Clinical Trials Accelerator Platform.
Why is community involvement so important?
When you hear the challenges people with CF are facing in managing their condition you truly begin to understand why you need researchers to be in the lab, why you need services and resources to support the emotional and physical wellbeing of those with CF, and why you need medications and treatment to be accessible to all. The WHY is the most critical thing to understand, but this understanding also helps to inform the HOW. The power of lived experience cannot be underestimated.
Tell us about the new partnership with the British Society for Research on Aging (BRSA)
When talking to the community, I consider who else is working in that space—peer organizations, patient groups, health research charities—and try to make connections. Growing older with CF and ageing is a key priority right now, so I looked into who else was working on ageing research and came across BSRA.
When I contacted them, they were very engaged from the start. We spoke to their Board of Trustees about a growing older with CF workshop we ran a few years ago and ongoing research areas. They felt their networks would be interested too, which could help us expand beyond cystic fibrosis (CF) research into related fields. We’ve now formally agreed to collaborate. I’m so excited about the difference that this new partnership could make for people with CF in the future.
What do you love most about what you do?
The relationships I get to build are the best thing about my role and hearing from those who live with CF on a daily basis is my motivation. People share some of their most sensitive and challenging experiences, but I know they are doing so in the hope it will benefit others.
Can you tell us about your previous role as a CF nurse?
My last nursing job before joining the Trust was working as a specialist nurse in an adult cystic fibrosis team. I was in the role for some landmark changes in care and treatment and witnessing the impact of this was just incredible, but it also made me realise how much there is still to be done. It was a huge wrench for me to leave nursing. This role allows me to work with the CF community in a different way.
Tell us something people might not know about you?
When I was 26, I spent several months in Africa, travelling and doing some volunteer nursing. I met some inspiring people and learned a lot!