18 January 2023

Trust joins groundbreaking CYP cancer research project

Leading cancer charities Young Lives vs Cancer, the Children's Cancer and Leukaemia Group (CCLG), the Ellen MacArthur Cancer Trust, and Teenage Cancer Trust are working in partnership to build a new evidence base looking at the psychosocial needs of young cancer patients and how the current system supports them.

The groundbreaking research will also identify gaps and what needs to happen to build a better future for children and young people diagnosed with cancer.

Dartington Service Design Lab - a charity with a view to improving children’s outcomes through research, systems thinking and co-design approaches - has been commissioned as the research partner. They will undertake experience-led research, which will be co-designed by young people, parents of children with cancer and key stakeholders, along with Edge Hill University.

The aim of the research is to improve policies and practice around cancer support. It also hopes to model equitable research practices when working with young people, particularly those with lived experience of cancer.

Frank Fletcher, Ellen MacArthur Cancer Trust CEO

Frank Fletcher, Ellen MacArthur Cancer Trust, CEO, said: "Our ambitions for the next three years are to be accessible to all young people who have a cancer diagnosis in the UK and have the biggest impact possible on every one of them.

"This research will help us all better understand the children and young person’s (CYP) cancer care and support landscape we operate in, to help us not only achieve those ambitions but to inform our strategy in the future.

"It is a huge honour for an organisation of our size to be invited to be part of such a landmark research project, and I'm excited about what we are going to learn that is going to make a difference to how our sector achieves the best possible outcomes for young people."

Research will take place throughout the first half of 2023 with initial findings expected in the autumn. Young Lives vs Cancer, CCLG, the Ellen MacArthur Cancer Trust, and Teenage Cancer Trust will be using the research findings to shape their future strategic thinking.

More reaction

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer: “It’s hugely important charities really understand the needs of those they support. At the very heart of Young Lives vs Cancer’s next strategy will be children and young people with cancer and what they need, so it’s vital we take a step back, look at the system around them, and identify gaps and what needs to happen to build a better future for them.

“Dartington Service Design Lab's enthusiasm to support the children and young people’s cancer sector, to build a cohesive system around young cancer patients, shines through. I think this research will benefit the whole sector and would really welcome their support and input going forwards.”

Prof. Tim Hobbs, Chief Executive at Dartington Service Design Lab: "This is a hugely exciting and innovative programme of applied research and design. What is particularly exciting is that four of the largest and most impactful children’s cancer charities are collaborating and grounding their future strategic direction by working together to better understand the needs of children and families.

"This approach also brings together the voices of children, young people and families, new evidence and systems thinking, which will help inform plans about the best roles each organisation can play in the sector - alone and together - to help improve outcomes for those they serve. We are delighted to be working with such forward-thinking partners and inspiring young people."

More information

To find out more about the Ellen MacArthur Cancer Trust or this research, please contact Karenza Morton (Communications Manager) at [email protected] or 07376 467196.

About Dartington Service Design Lab - is a research and design charity focussed on using evidence and design in innovative ways to help those working with children and young people have a greater impact. Their team of researchers and designers are skilled in service design and improvement methods, systems thinking approaches, data visualisation and communications.

Dartington work at the intersection of evidence-informed practice and user-centred design. They also work at the intersection of public system reform and service design and improvement. They have deep respect for both evidence and the experience and expertise of practitioners, young people and families and think public systems and services can be more impactful when they are considered together.