This creative and collaborative public engagement project brought together young adults who have had radiotherapy and radiation research. The process and outputs provide a unique view of patient experience and demonstrate the meaningful impact patient engagement and involvement can have.

Previous work [1] has explored the unique challenges that adolescent and young adult cancer survivors face. Having cancer as a teenager or young adult is very different from having it as a child or later in life. Getting a diagnosis and treatment can be challenging for many reasons. For example: if you get sick as a young adult or teen, doctors might not consider cancer as a cause. Once diagnosed and given a treatment plan, young adults may also be caught in the gap between paediatric and adult services with little peer support. We wanted to give young adults the opportunity to share their experiences, connect with peers, and find out about our radiation research and shape future radiation research.

Key themes in our workshop discussions echoed previous research. Young adults spoke about 1) being young and diagnosed with cancer, 2) feeling different to friends and 3) the need for peer support. It was clearly the first time many of the group talked to anyone of a similar age who had been diagnosed with cancer and received radiotherapy. This project adds weight to previous research [7], which highlighted the “paradox of being young and having cancer”. It is important for researchers and clinicians alike to keep listening to young adults to understand how to best meet their needs.

Key learnings were that it requires a dedicated and (com)passionate person with connections to national cancer charities to recruit patients and involve them appropriately. When designing the project, constant iterative feedback is needed not only from the charities, but also young adults both with and without radiotherapy experience. Finally, visually capturing the essence of discussions and keeping the door open beyond the workshops further enhances impact.

We felt strongly that we wanted to run the project in line with NIHR guidance [8] and reimbursed each young person for their time taking part in the project. This is one way in which people can be given recognition for the time, skillset, and expertise that they contribute to the research process even if money is not a motivating factor for participants; it certainly was not here.

We also learned important lessons when running an engagement project online. Efforts were made to ensure the young people felt comfortable. Including allowing the young adults to join the online call before the researchers, using humorous ice breakers and acting on feedback from reflective surveys at the end of each workshop. Many young people also used the WhatsApp group to communicate with the project coordinator during workshops. One possible improvement for the future is to break into smaller groups to ensure all discussions can be completed within the allotted time.

Radiation Reveal made a positive impression on all researchers. They expressed a heartening and strong personal impact from hearing the young people’s experiences with treatment and life during and after radiotherapy. The researchers said they learned a great deal about the clinical aspects of radiotherapy, having become more aware of the often dismissed gap between laboratory research and how patients experience its clinical application. According to the researchers, filling in that gap with more information may lead to more effective research. This is reflected in the following quote from a researcher:

“I just wanted to thank you for organising the Radiation Reveal workshops which have been so insightful for me and motivating for my work. I have been speaking to other colleagues at work and many are really interested in gaining better patient/clinical perspective, as we so easily lose sight of the bigger picture.”

However, all researchers acknowledged the limited impact of the project on their research work. All referred to pre-established research guidelines and scope, conditioned by funding and pre-approved research proposals. It is possible that factors like researcher seniority and research field also restrict the impact on research direction and it became clear that there is a need to correctly time public and patient involvement projects, i.e. pre-funding. They said, therefore, that Radiation Reveal had not yet directly informed the scientific direction of their work. Two principal investigators have since submitted funding proposals (which included plans for patient involvement activities) on topics discussed during the workshops; this shows the necessity of public engagement and involvement activities to include not only early career researchers, but principal investigators also. Simultaneously, two researchers expressed a change in their mindset while approaching research and said that a closer relationship with patients’ clinical experiences had inspired new research questions and ideas for future research, especially regarding treatment side effects. Finally, some researchers have continued cultivating a culture of patient involvement within their research activity and have since been leading independent projects building from Radiation Reveal.

The project was praised for creating an environment that favoured honesty and openness; one of the researchers attributed this to forming a group within a similar age range. Researchers saw Radiation Reveal as a step towards better young adult care, aimed at important challenges still to be overcome, such as helping professionals understand the patients’ point of view; better informing patients; getting information across to clinicians, patients, and their families, and putting patients in contact with each other.

Since this project, all researchers have continued in other involvement and engagement projects, some of these with young adults from Radiation Reveal. By making use of peoples’ knowledge, lived experience, and networks, public involvement helps make research more relevant to the end-users and ultimately leads to better services, treatments, and care [9]. The value and benefits of public and patient involvement in research have been well documented but there can be challenges both in recruiting younger participants and moving towards involving patients, particularly around lab-based research. Radiation Reveal started as an engagement project but as the project continued, relationships were built and the young adults had more involvement in research, not just with the researchers involved in this project but also through other patient involvement groups. Researchers valued this experience and have since initiated further projects to involve patients in their research.

With an increasing request from funders to plan and carry out public engagement as part of the funding and research cycles, we hope to have provided others with useful ideas to develop their own meaningful patient and public involvement and engagement activities.