In 2019, NHS England produced guidelines for the Teenage and Young Adult (TYA) Cancer services. The paper gave us a target of increasing entry into clinical trials, along with the requirement that all patients are offered biobanking and genomic testing.

Statistics showed that TYAs are underrepresented in research and often ‘fall through the gap’, meaning they do not get offered access to trials and this sometimes prevents TYAs from accessing new innovative treatments. There are many complex reasons for this but investigations showed that one of the explanations for why TYAs were less likely to enter clinical trials, donate samples for genomics and biobanking, was that they simply didn’t understand what they are, or what they involved. We realised that by not understanding what research can achieve, the value of participation is lost.

In 2022, a pilot project was started by Ben Hood, a Cancer Research Nurse Consultant and Karen Hamlen, a Teenage Cancer Trust Lead Nurse.

The project aimed to better understand the challenges TYA patients experienced when accessing research. Working together with TYA patients, we aimed to come up with ideas and solutions to address these national challenges.

The project identified essential information that patients and their family members felt would be useful to know before being asked to take part in research in a format that they found easy to use.

After discovering a lack of age appropriate educational resources, we decided to create a professional and patient partnership to find ideas and solutions to give this group a baseline understanding of research. We have taken every opportunity and chatted with patients in hospitals, at home and at peer support events to find out what they really wanted. The group has had final say in how this website looks, what has been included and the level of information they wanted. We have tried to provide basic animations along with interviews and hundreds of facts to satisfy even the most inquisitive.

Through this project this website was created. It is the UK’s first TYA cancer clinical trials, genomics and biobanking online educational resource. By giving TYAs an easy to understand resource encompassing different learning styles, we hope to empower them to take a lead in their care.

TYAs make up around 1% of all cancer diagnoses in the UK. You’re all part of a small community of people going through similar experiences. We want to bring this community closer together and give you the resources to educate each other and those outside the community.

We’ve been blown away by the kindness and laughter of each person connected to this project. There are plenty of people at different stages of their journey, they might not yet have this positive outlook. Hopefully, any TYAs introduced to the project will see this positivity and want to get involved.