Lived experience engagement and involvement

Engage: The Children & Young People’s Cancer Lived Experience Platform is a collaborative initiative from CCLG: The Children & Young People’s Cancer Association (CCLG) and Solving Kids’ Cancer UK – two leading charities united by a shared commitment to improving outcomes for children and young people affected by cancer and their families.

Ensuring that the voices of those with lived experience are not only heard, but shape, inform and meaningfully contribute to research, policy, service development and more is paramount to the work of both CCLG and Solving Kids Cancer UK.

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.

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, and enhanced care delivery. 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.

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 ensure that diverse voices from across the children and young people’s cancer community are empowered to take part.

Engage, our national platform, will train and support parents, carers, patients, survivors and family members to become confident, informed patient advocates. Researchers, health professionals, charities, pharmaceutical companies, and others seeking to bring lived experience in their work can promote opportunities through Engage – this includes recruiting lived experience representatives to participate in research design and implementation, policy development, service design, development and evaluation, and more. We will also use the Engage network to promote opportunities to participate in research, for example through surveys, questionnaires, interviews and focus groups.

Our principles for lived experience engagement:

• Engagement with lived experience representatives should be meaningful and where practical contribute to the design, delivery and/or evaluation of a project or piece of work. We support the principle that lived experience representatives should be appropriately remunerated for their time. We have guidance on appropriate rates for honoraria or other forms of remuneration. We recognise that not all projects will be able to do this initially, so we are not mandating payment at this point for participants (although any expenses e.g. travel should be covered) but we would expect, where possible, this is considered – and where projects are grant funded and PPIE costs are available from the funder this should be included in grant applications. 

• As we develop the Engage platform, we will introduce short, practical training modules for professionals and others who wish to use lived experience representation in their work, and we will expect those using Engage to complete these.

• We want to be able to evaluate the impact of Engage, and therefore we will ask those using the platform for some basic information at the conclusion of their project about their experience of using it, and how they have used lived experience engagement in their work.

Opportunities for researchers

To promote an opportunity through Engage, you should send information to engage@cclg.org.uk.

Where required, projects should have appropriate ethical approval in place. The information you send should include a clear description of the project, the requirements for involvement (e.g. the approximate time commitment, whether there are in-person meetings, online meetings, review of documents etc), any particular requirements for participants (e.g. experience of a particular type of cancer), information about remuneration, whether there are in-person meetings, online meetings, review of documents etc, any particular requirements for participants (e.g. experience of a particular type of cancer), and clear information about how to get in touch for further information about the opportunity.

We also ask that those promoting opportunities through Engage respond to requests for further information from the Engage team after promoting an opportunity through us – such as feedback on lived experience participation in your work – so that we can evaluate and improve how Engage works. We also ask that you keep lived experience participants informed about how their contributions have impacted or changed your work as it has developed.