The importance of lived experience

Ensuring that the voices of those with lived experience are not only heard, but shape, inform and meaningfully contribute to our work is paramount to the values of both CCLG and Solving Kids’ Cancer UK. Your lived experience can change the future for children and young people with cancer, by supporting the design and delivery of research, informing the development and evaluation of services, and influencing policy, government plans and other key decision makers across the system.

By people with lived experience, we mean those who have knowledge acquired through direct, first-hand and personal experience – in this context, those who have received a diagnosis of cancer as a child or young person, or are a parent, carer or family member of a child or young person who has received a cancer diagnosis. You may also hear lived experience involvement and engagement referred to as ‘advocacy’, ‘PPIE’ (patient and public involvement and engagement), ‘consumer representation’ and other terms.

Across the children and young people’s cancer landscape, the value of lived experience is increasingly recognised. Insights from patients, parents, survivors, and siblings have shaped research priorities, improved clinical trial design, enhanced care delivery, and contributed to national policy work including the development of the recently published National Cancer Plan.

Lived experience involvement and engagement is currently fragmented, inconsistent, and under-resourced. CCLG and Solving Kids’ Cancer UK want to shift the dial to a sustainable, structured model that supports those who take part, and ensures that diverse voices from across the children and young people’s cancer community are empowered to participate.

What is Engage?

Together we are building Engage, a national platform to supports parents, carers, patients, survivors and family members to get involved in advocacy in ways that work for them. Through education, connection and mentorship, it will help people build knowledge, confidence, and recognise the value of their lived experience.

Participants will be able to use their lived experience to shape research, policy, clinical practice and service development to ensure that future children and young people diagnosed with cancer, and their families, benefit from insights and research grounded in real world experience.

Opportunities for those with lived experience will include:

• Helping our charities fund priority research, for example by reviewing research grant applications from researchers and sharing your views and feedback

• Working with researchers to shape, plan, deliver and evaluate real research projects, from qualitative studies to clinical trials

• Becoming a member of committees responsible for shaping and leading research and other activities, and attending meetings, for example the UK3CR Children’s Cancer Clinical Research Groups

• Supporting our charities to develop services, for example reviewing health information that we provide on our websites or in hospitals

• Getting involved in policy and advocacy work (influencing governments and other decision-makers) through taking part in consultations, attending meetings and more

• Sharing your story, for example in writing, on video or at in-person events to raise awareness of the key challenges and issues facing children and young people with cancer

• Through the Engage community, we'll also offer opportunities to participate in research projects, for example through completing surveys, questionnaires and interviews.

You can choose how much you are involved – there is no obligation to participate in every opportunity offered through Engage.

The platform will offer:

• Educational materials to help participants understand how their experience can contribute meaningfully to research and care

• Mentorship and guidance from experienced advocates and professionals

• Support and wellbeing resources to ensure safe, trauma-informed participation

• Clear pathways to involvement, explaining the many ways people can contribute, from research design and trial review to policy consultation and service improvement.

How will Engage help the research community?

Opportunities to get involved will not be limited to those from CCLG and Solving Kids’ Cancer UK as we’re building a platform for the whole children and young people’s cancer sector, so there will be opportunities to get involved in work with other charities, researchers, hospital teams, pharmaceutical companies and more.

Importantly, Engage will also serve the research and clinical community, helping professionals understand the value and importance of patient engagement.

• Training and resources for researchers and clinicians on how to work ethically and effectively with people with lived experience

• A matching service to connect researchers and professionals with trained advocates for involvement opportunities

• A shared space for dialogue, learning and collaboration

Bringing together Solving Kids' Cancer UK's deep expertise in parent-led advocacy with CCLG’s professional reach and infrastructure, this platform will be inclusive, ethical and impactful; a shared space where lived experience drives real change in children and young people’s cancer.

Who can join?

We welcome anyone with lived experience of childhood cancer or teenage and young adult cancer (diagnosed between birth and their 25^th birthday), either as a patient or as a parent/carer or other family member. You must be 18 years of age or older to participate. We are currently looking at ways we can involve people under the age of 18 years in Engage safely, and will add information about this in due course. Initially, Engage will be open to participants in the UK and Ireland, although we are talking with international partners about opening the platform more widely in the near future. When you apply to join the Engage community, we ask that you agree to abide by the Engage Community Charter.

How does it work?

We need to take some information about you to join the Engage network, including how to contact you and some details about your/your family member’s cancer diagnosis. This information will be stored securely and used as outlined in our privacy policy. The information you provide will be shared between CCLG and SKC as the two partners leading this work.

We'll keep in touch with you by email, and through the Engage online community. Once your application has been approved, you'll receive information about how to join the online community. This will work a little like a (closed) social media platform where you’ll be able to find out about opportunities to get involved, as well as access training materials, guidance from experienced advocates and professionals, and build relationships with others with lived experience to help us build a community of advocates.