Website designed by nurses aims to improve cancer research

Young people affected by cancer treated at the Freeman Hospital in Newcastle have joined forces with Teenage Cancer Trust and Cancer Research UK to create and launch the website.

“The website demystifies complex information into teenage and young adult patient friendly language”

Ben Hood

Called Teenage & Young Adult Research or TYAR for short, it provides clear and age-appropriate information about taking part in three areas of cancer research – trials, genomics and biobanking.

The project has been spearheaded by Teenage Cancer Trust lead nurse Karen Hamlen and Cancer Research UK nurse consultant Ben Hood.

Both work at the Northern Centre for Cancer Care, part of the Newcastle upon Tyne Hospitals NHS Foundation Trust.

In response to feedback that information about taking part in research was difficult to understand, they enlisted the support of their young patients to design, create and test the new site.

The site uses video, animations and lists answers to the most frequently asked questions about each of the three topics to help young people understand what taking part in cancer research involves.

Ms Hamlen 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.

Karen Hamlen

“Our initial discussions with the patients highlighted the lack of understanding around every aspect of research,” she said.

“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.”

Ms Hamlen added: “By giving the patients knowledge, we hope to empower them to take a lead in their treatment.

“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.”

Recent reports from Teenage Cancer Trust and Cancer Research UK have both highlighted the need for better information for teenagers and young adults considering taking part in clinical trials.

Mr Hood said: “As they become more complex, in terms of 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.”

He highlighted a national online survey conducted in 2023 by Cancer Research UK, which examined teenager and young adult cancer patients’ thoughts around clinical trials.

Major findings from the survey 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, said Mr Hood.

He added: “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 the two cancer charities. Newcastle Hospitals Charity then 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.

“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,” he said.

Each year approximately 130 young people aged 13-24 in the North East are newly diagnosed with cancer each year.

The Teenage Cancer Trust provides dedicate nursing care and support for them by funding specialised nurses, youth workers and hospital units in the NHS.

Newcastle Hospitals is one of the largest teaching trusts in the UK. Its sites include the Royal Victoria Infirmary, Freeman Hospital, Great North Children’s Hospital and Northern Centre for Cancer Care.

The trust is home to two of the charity’s units, one at the Northern Centre for Cancer Care which is designed for 19-24-year-olds, and one at the Great North Children’s Hospital, for 13-18-year-olds.

The TYAR website project has been shortlisted for a 2024 Nursing Times Award in the Clinical Research Nursing category.