Young people treated for cancer across the North East and Cumbria have joined forces with Teenage Cancer Trust and Cancer Research UK to create and launch a new website that aims to describe in simple terms how teenagers and young adults can take part in research.
The website provides clear, understandable and age-appropriate information about taking part in three key areas of cancer research – clinical trials, genomics and biobanking.
The project has been spearheaded by Teenage Cancer Trust Lead Nurse Karen Hamlen, and Cancer Research Nurse Consultant Ben Hood, who both work at the Northern Centre for Cancer Care, part of Newcastle Hospitals.
Working with young people
In response to feedback that information about taking part in these areas of research was difficult to understand, they enlisted the support of young people they work with to design, create and test the new site.
The site uses video, animations and lists answers to the most frequently asked questions about each topic to help young people understand what taking part in cancer research involves.
Karen Hamlen, Teenage Cancer Trust Lead Nurse at the Teenage and Young Adult Cancer Service, said: “Research helps us develop new and better treatments for cancer, and can save lives, but at present far too few young people are taking part. Research is the only way to find new and improved treatments for cancer, hopefully saving or prolonging lives whilst trying to also reduce side effects. Much of the progress that has been made in treating cancers that affect young people has been made because of research.
“Our initial discussions with the patients highlighted the lack of understanding around every aspect of research. We hope that this new site will help more young people understand exactly what is involved in taking part, so that they can make an informed decision, understanding what is involved and why the doctor is suggesting a trial. It will hopefully also give the patient the tools to ask appropriate questions themselves.
“By giving the patients knowledge, we hope to empower them to take a lead in their treatment and we think that this new learning resource will lead to an increase in young people taking part in cancer research – whether that’s by agreeing to be part of a clinical trial testing new drugs, giving a sample for genomic testing, or simply donating to the Vivo biobank to help future researchers.”
Ryan’s story
Ryan Fox, 23, from Blyth, Northumberland, was diagnosed with Rhabdomyosarcoma, a rare cancer, last year. He was offered the opportunity to take part in a clinical trial but found the information available to help him decide whether it was right for him hard to understand.
I was given two options – the clinical trial option was 9 months of intense chemo followed by 6 weeks of proton beam therapy, then a year of maintenance. The standard option would have been 7 months of chemo. I was told that the clinical trial could give me a better chance of getting rid of the cancer for good.
“I was given a load of leaflets and things to help me decide whether or not to take part, but they were difficult to understand so in the end my friend’s mum, who is a nurse, came to my appointment to ask loads of questions to see if being on the trial would be right for me.
“I think the new website with videos and other information about taking part in clinical trials will be really useful, and I hope it helps other young people who are in my situation now who are having to make a choice about what treatment to go for.”
Demystifying clinical trials
Ben Hood, Cancer Research Nurse Consultant, said: “As clinical trials become more complex, in terms of trial design and the science behind the treatments being tested, we’ve seen a rise in the need for further educational resources that demystify the basic concepts of what a clinical trial is – to support patients make an informed decision about taking part in them.
“In 2023 a national online survey by Cancer Research UK examined teenager and young adult cancer patients’ thoughts around clinical trials. Major findings highlighted lack of educational resources within the NHS that explained what clinical trials were. The information collected highlighted high rates of misconceptions around clinical trials and a reluctance to take part in one.”
He added: “The cancer patients that take part in clinical trials are incredible, they give up precious time to take part. We want to give them the tools to make an informed decision about considering taking part, and I believe this resource does just that. The website demystifies complex information into teenage and young adult patient friendly language, allowing patients to make a more informed decision about taking part in a clinical trial.”
The site was made possible thanks to initial funding from Teenage Cancer Trust and Cancer Research UK. After feedback from young people that video and animations could be one of the most effective ways to convey information, Newcastle Hospitals Charity supplied additional funds to complete the project.
Richard Haigh, Associate Director, Funding and Partnerships, at Newcastle Hospitals Charity said: “We’re really delighted to have been able to support this work, and to have been able to collaborate with other charities to develop this incredible resource to help young people to really understand clinical research, biobanking and genomics. Like everyone involved – we’re hoping this can have a huge impact on the numbers of teenagers and young people taking part in clinical trials.”
- Read the Teenage Cancer Trust’s report on improving young people’s access to clinical trials.
