The Children’s Cancer Priority Setting Partnership (PSP) aims to identify gaps in research and ‘unanswered questions’ on children’s cancer by including patients and parents. Susie Aldiss, Prof Faith Gibson and Dr Jess Morgan, of the project team, explain more.
Involving patients of all ages, and their families, in research is so important for ensuring that the best research is done to improve the lives of children with cancer. Patient and public involvement (PPI) guarantees a diversity of voices and ideas to shape what research is carried out and how research works.
This might mean helping to design, interpret or share the results of a particular piece of research, but it can also be helping researchers and research funders identify what research is most important to do next.
What is the Children's Cancer PSP?
PSPs find out what areas of research are important to patients, families and the professionals who care for them, using a method developed by the James Lind Alliance (JLA). Patients, carers and professionals come together on an equal footing to develop a ‘Top 10’ list of unanswered research questions/topics.
Why’s it important to involve children and families in setting research priorities?
Topics for research in children’s cancer are often influenced by the interests of researchers and the pharmaceutical industry. This may overlook what’s important to children and their families. The Children’s Cancer PSP, funded by CCLG and The Little Princess Trust, aims to make sure that future research focuses on what really matters and where research would make the biggest difference to children with cancer and those around them.
How are children and families involved in the PSP?
Our steering group, led by an independent chair from the JLA, includes five parent representatives and one patient representative, alongside a wide range of professionals, and this group is involved in planning and making decisions about the project.
Amy Walsh, Parent Representative said:
As a parent, I found the opportunity to be involved in the PSP a positive, tangible thing I could do following my son’s death. When Rory was diagnosed with cancer, I found myself propelled into a world in which I felt I had no knowledge, context, or control. It’s so important to me that parents feeling this way have a means by which they can realistically influence the future of childhood cancer care, to feel like they’re being listened to.
Alex Brownsdon, Patient Representative said:
I wanted to be involved with the PSP because of the exciting opportunity to contribute towards future research topics. I’ve found the experience to be extremely positive and that my presence is valued. I’m very grateful to be part of a group that is striving to improve the shape of future childhood cancer research.
Next steps
So far, we’ve collected questions/ topics using online surveys – we had one survey for parents, families, professionals and adult survivors of childhood cancer and three surveys for children and young people aged four to 15. We produced animations to help explain the surveys to children.
The next step is to ask people to tell us the questions they think are most important from the questions collected. This again involves children and families. We will then hold a workshop where we will bring together people who experienced cancer as a child, family members and professionals to decide on the most important questions and produce the ‘Top 10’ priorities.
The final questions will be promoted to researchers and research funders to ensure what matters most to children, their families and professionals, are considered in research programmes going forward.
Find out more information about The Children's Cancer PSP here
From Contact magazine issue 96 - Autumn 2022
