Lorna Fern is the Research & Development Coordinator of the National Cancer Research Institutes (NCRI) Teenage, Young Adult and Germ Cell Clinical Studies Group, Chair of the NCRI TYA Health Services Research Sub Group and the National Lead for Patient and Public Involvement for the BRIGHTLIGHT study. She is funded by Teenage Cancer Trust and here she explains her role and the importance of research in development of TYA care now and for the future.

 I’ve always been interested in cancer and following my honours degree in molecular biology and masters in oncology at the University of Nottingham, I decided to do a PHD in molecular oncology. Following this I worked as a stem cell transplant scientist in the adult haematology transplant unit at Nottingham City Hospital. It was during this time we transplanted a number of young people and I developed a real interest in the care of teenagers and young people with cancer and the unique needs they have compared to adults or children. This interest has fuelled my career; sparking a passion to involve young people in the studies I work on to produce research that will create a real difference to their lives.

Creating change

The main focus of mine and my colleagues’ work has always been to improve access to research for young people. Our commitment to this has resulted in changes which now mean that Cancer Research UK ask all new investigators to justify why they are using a certain age range in clinical trials. If there is no scientific reason for excluding young people from the proposed study the age restrictions now have to be changed. This ensures that teenagers and young adults won’t be excluded from trials which could ultimately improve their care. It’s so exciting to see changes happen whilst we’re still working on a study; it can sometimes take years for changes as a result of research to come into action!

Collaborative approach

It’s essential for young people to have an active collaborative role in the research that concerns their care. Our current studies advocate user involvement; getting teenagers and young adults on board to develop the research questions, identify any problems with the methods and recruitment and to also evaluate the study’s findings.

I’m delighted to see that as well as this, TYA cancer care has collectively moved into an era of collaborative working. This means that through a multi professional approach, young people are receiving the best possible care from their designated hospital and/or principle treatment centres, depending on their specific needs. A whole range of professionals from clinicians to researchers to psychologists are increasingly working together to enable this, which is essential for young people.

Setting the research agenda with patients and professionals

The research agenda has traditionally been set by professionals - with their interests and what they think are the most important things to research. However, this may not be the same as what young people think is important. We are just about to complete a joint James Lind Alliance (JLA) research priority setting exercise between young people and professionals. TYAC members and young people will have a second chance to vote on their research priorities later this month. This will give us the top ten research questions prioritised by young people and professionals, as well as around 200 additional research questions for TYAC members to explore and consider, for undertaking their own research and to contribute to the ever-growing knowledge bank we have.

The future of research

I’m grateful to be working at the very forefront of research into TYA cancer care. The BRIGHTLIGHT study, for which I am National Lead for Patient and Public Involvement, explores and evaluates the specialist TYA cancer care and we hope that the results of our work will continue to be integrated into practice across the UK.

It is exciting to see the JLA project nearing completion so we can be sure that future research projects are important to both young people and professionals. The future of TYA research must involve patient participation in research projects, in order to truly make a difference to their care, their lives and the lives of other young people with cancer.