In our new video series, ‘Inside Supportive Care’, we’re taking you behind the scenes of the Candlelighters Supportive Care Research Centre.
With a £1 million, five-year investment, we’re driving research that can transform treatment experiences and improve young lives – in the UK and internationally, and that all starts with putting the experiences of patients and families at the heart of the research.
“If you’ve got a bunch of people that have experienced [cancer], telling you what’s important, you should really listen to them.” Professor Bob Phillips explains.
When opening the Candlelighters Supportive Care Research Centre (CSCRC), a key consideration was how to put the needs and wants of families and patients at the heart of the research. Patient and parent involvement in research is vital for producing relevant, high-quality insights with practical outcomes.
Though you might walk into the group and see a hubbub of activity and conversation with adults and children, these sessions are drawing on the expertise and experience of parents, children, and researchers, in order to guide the future of research with everyone in mind.
The research group brings those groups together, getting patients and families to share experiences, ask and answer questions and collaborate with researchers to understand what works and what doesn’t and how better to navigate research.
Most importantly, the group seeks to understand what it is that the Supportive Care Research Centre should be focusing on, by recognising what makes a difference to the people at the heart of the research, and asking the questions, “What is the most important thing to you?”, “Where is it that we should be going with this research?”
The children, and adults both enjoy the sessions, and their contributions ensure that research goes in the right direction, shaping the future for families and children affected by childhood cancer.
The engagement in the groups facilitated by the CSCRC is exceptionally high, and gains interest internationally from the research community and is setting a shining example for leading medical research.
As Professor Bob notes, “what we’ve done here in the Candlelighters Square and the Candlelighters Supportive Care Research Centre, is advance this in ways we really haven’t seen in children’s cancer work anywhere else.”
