PPI is about researchers and those who fund research teaming up with people who have personal experience with a health condition. This collaboration helps make sure that research focuses on what really matters to the people it’s meant to help, like patients and their families. Researchers might come up with great scientific ideas, but without knowing how these ideas affect families in real life, they might not work out as well as hoped. PPI makes sure research is not just scientifically strong but also practical, patient-friendly, and truly helpful in improving lives. It helps us focus on research that directly benefits patients and makes a real difference in their quality of life.
How are families involved in CCLG’s research?
Families play a crucial role in CCLG’s research activities. We have an amazing team of volunteer parents, carers and survivors in the CCLG Patient and Public Involvement group. Whenever researchers apply for money from CCLG or our Special Named Funds for their research projects, our PPI group helps us assess their applications. They each bring unique perspectives and lived experiences, providing invaluable feedback to researchers. Their input helps ensure that our research addresses real-world challenges and priorities that matter most to those affected by children and young people’s cancers. This collaborative approach helps us focus on practical solutions that improve patient care and outcomes, while also helping our researchers develop their engagement skills.
Who can get involved?
We welcome anyone with experience of children’s and young people’s cancers. This includes parents, carers, family members and those who have personally had cancer themself, either during childhood, as a teenager, or as a young adult. You don’t need any scientific knowledge or background, because the researchers are bringing the science. We need PPI volunteers for their unique perspectives and insight into whether research proposals chime with real-life experiences. Every experience of childhood cancer is different, and you never know when a research project may speak to your personal experience – whether it’s about treatment decision making or follow-up care and ‘scanxiety’. We provide all the necessary support and guidance to help people participate effectively, and it’s very much a twoway street in that we want to learn how to support them better, too.
What are the benefits for families getting involved in PPI?
Some of our PPI group members recently told us that they find it very rewarding, even healing, at times. They get insight into how research happens and see firsthand the progress being made, which can be reassuring. It also provides a sense of empowerment, knowing their experiences and opinions are directly contributing to improving care and outcomes for future patients. We plan to further develop the PPI group, which is currently small, into a larger, supportive community where people with lived experience can connect with others who understand what they’ve been through. Through having a larger group, there’ll be more opportunities for those with lived experience to get involved with shaping a wider range of CCLG’s research activities.
How to get involved
To get involved with the CCLG Patients and Public Involvement group, please email research@cclg.org.uk or register your interest here
From Contact magazine issue 104 | Autumn 2024
