When you think about childhood cancer research, you probably think about scientists in white lab coats. However, there’s a lot more to the world of research than just laboratories. There are researchers who are also doctors, ones who work with artificial intelligence, those who look at patients’ experiences, and many more.
One thing is common to all types of researchers – they have to decide what they want to research. Historically, researchers chose to work on things they found interesting, or thought were important. However, this might not align with what is important for children and families.
People who are going through cancer might have different priorities. In 2022, we shared the top 10 priorities for childhood cancer research. It was no surprise to find better treatments and cancer prevention were high priorities. However, six of the priorities were about children’s experiences of going through cancer. For example, ensuring patients and families get all the information they need in an appropriate way. These sorts of priorities would be unlikely to be picked up without the input of families.
The final top 10 priorities, with some of the parents, patients, and professionals who helped decide them.
There’s only one way to find out what children and families think about a research project – you have to ask them! Luckily, at CCLG we have an amazing Patient and Public Involvement (PPI) group, made up of parents, carers, and survivors with experience of childhood cancer. They review all the applications for CCLG research funding and give feedback on what could be improved from their perspective.
This week, I caught up with five of our amazing volunteers to find out why they chose to get involved, and what they think about PPI.
Sara joined the PPI group after her son’s bone cancer treatment
Eli, the oldest of Sara Barnett’s three children, was diagnosed with Ewing sarcoma aged 15. While Sara had always had an interest in research as a nurse and midwife, Eli’s treatment inspired her to get involved with childhood cancer research. She said:
“Eli had chemotherapy at University College London Hospital and was the first teenager from London to have proton beam therapy at The Christie Hospital in Manchester. He’s now happy and healthy, and is studying Biochemistry at university.”
I joined the PPI group because I wanted to put Eli’s and my family’s experiences to a positive use. I have seen the progress research has made and how it influences care. Research is essential - it is the way forward for interventions and trials that hope to develop better treatments.
Sara said there is a lot of information to absorb and reading to do in the PPI group, but the team is helpful and there is lots of support. She is keen for more parents and families to get involved because their experiences are useful to researchers. She added:
“PPI isn’t just important – it’s essential. A researcher can have an extensive scientific plan, but if their research doesn’t work for patients, if their aims and planning are not understandable or acceptable, it’s all to no end. PPI helps ensure that research is feasible, comprehensible, justifiable, and will actually work for patients. It is a huge privilege to have a say and an input into the research that is happening.”
Kate’s son Sebby was diagnosed with leukaemia
Kate Willis, a mother of three sons, left her job at Google to care for her son Sebby when he was diagnosed with acute lymphoblastic leukaemia aged two.
Having always had an interest in science, Kate joined the PPI group to support childhood cancer research. She said:
I have found the PPI group extremely interesting and rewarding. It has been great to understand how much research is going on that I wasn't aware of, and to see how the process of funding scientific research works.
“I've also been able to see the importance of making the research accessible to families and the wider public, ensuring everyone is aware of it and can engage with what is going on.”
Kate with Sebby
Kate says that PPI work shows researchers the real-life impact of research and reassures parents that progress is being made. She added:
“Scientists, and even doctors and nurses who see patients every day, can't fully understand what it's like to have a child with cancer and what would make life easier for families.
The practicalities of how treatment happens and how families can manage this are hugely important. So are the long-term side effects that continue years after treatment and may not be reported to the care team.”
Kate recommends getting involved:
It's hugely important to get more parents and patients involved in the research process so that we can really help to shape the direction that future research takes and ensure it's as meaningful and impactful as possible.
Lisa’s son had cancer aged just four years old
In 2023, Lisa Radcliffe joined the CCLG PPI group after experiencing the devastating impact of childhood cancer first-hand. She said:
I am mother, wife, headteacher, daughter, sister, auntie, niece, and friend - until a diagnosis of cancer turned my world upside down and took away my 4-year-old son and my identity.
Lisa got involved to make a difference for families in the future, and to take the negative energy from her son’s experience and use it to do good. Lisa said:
"I wanted to be part of the army of families, fighting to honour their children and ensure that research stops other families from experiencing what we did. Being involved in positive action for change has been a good motivator. It has also helped the healing process and made me feel less alone.
To other parents, I’d say - take the leap. This work has turned some of my darker, less colourful days, around. I feel listened to, that my opinion is worthy, and I am surrounded by people who understand.
Whilst there’s a lot to learn, the insights from people with lived experience of childhood cancer are immensely valuable to researchers. Talking about the collaborative nature of PPI work, Lisa said:
“I believe that patients, parents, carers and loved ones with lived experience can help influence and guide projects. They can articulate the benefits of research for patients so clearly. This collaboration can be exceptionally powerful in bringing different perspectives to research."
Rachel got involved in charity work after her son Jack’s rare cancer diagnosis
Rachel Daley is married and has two children. Her oldest son, Jack, was diagnosed with a rare type of cancer called Langerhans cell histiocytosis when he was just three years old. She said:
“Since Jack’s diagnosis, I have fundraised for research, sat on the HistioUK trustee board, participated in research, spoken at conferences, and co-authored two research papers all about patient and caregiver involvement in research and why it’s essential.
“I also founded a small charity called The Positivitree that supports families in our area who are raising children with a wide range of additional health and care needs.”
Rachel Daley
Rachel has found working with the CCLG PPI group fascinating and has become a staunch advocate for the inclusion of parent and patient voices as early as possible in research. She said:
Patients should always be the central focus of research – it needs to be done with patient groups and not to them. Lived experience brings a different level of energy and passion that I think is essential for clinical research and trial development.
Getting involved doesn’t require special skills – helping researchers understand what is acceptable to children or when things don’t make sense is very useful. Rachel encourages people to take part in research, partly because she has found it so rewarding. She said:
It’s been really interesting to work with the CCLG PPI group, especially meeting other parents whose children have had or are currently undergoing treatment. I love being part of a community with a shared mission to improve outcomes for childhood cancer and ultimately find curative therapies.
Tammy runs a charity in her daughter’s memory but also wants to support research
Tammy Main is mum to Abbie, Cameron, and two dogs. Abbie was diagnosed with sarcoma in 2013 and passed away just over four years later. Tammy said:
I am very proud of both my children. Abbie was an amazingly resilient and inspirational cheerleader, and Cameron is a British triathlete, recently winning a European Cup in Spain. Abbie wanted us to set up her own charity to raise ‘money towards hospitals and stuff’ and support other children with cancer, and we've been doing that ever since with Abbie’s Sparkle Foundation.
Tammy with Abbie
Tammy wanted to volunteer to help in any way she could, so joined the CCLG PPI group in the hopes of helping find kinder and more effective treatments. She has learnt a lot about what it takes to do research, and what is possible. She said:
“I have found it very rewarding and interesting! I am fascinated by what is already being achieved in the scientific world. I love being at the front line, hearing what developments are being made and what could be possible in the future. It also provides some comfort, knowing I am doing something positive to help other children and families dealing with cancer.
I’d always say to give it a try. Don't be put off by thinking it could be too scientific and hard to understand, that's not what we are here for. You are the expert in your experience, and that knowledge is valuable to researchers.
How to get involved
Getting involved in childhood cancer research as a parent is not only possible but really important. Parents and families bring a unique perspective to research, ensuring that it addresses real-world issues and improves the quality of life for children with cancer.
If you would like to get involved with the CCLG Patient and Public Involvement group, you can register your interest here or email us at research@cclg.org.uk for more information.
Read next: Is it ever too late to become a childhood cancer researcher? With Dr Jessica Taylor
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on X: @EllieW_CCLG