New strategy to improve research opportunities for teenage and young adult cancer patients
The NIHR Clinical Research Network (CRN) North West London has joined forces with many other organisations to develop a strategy to improve research opportunities for teenage and young adult (TYA) cancer patients.
The most recent meeting took place on Friday 5 April 2019. Among those attending were the NIHR CRN cancer leadership team, Children and Young People’s Cancer Subspecialty Leads from each Local Clinical Research Network (LCRN), National Cancer Research Institute, NHS England, clinicians involved in treating TYA cancer patients and key charities working for and with TYA cancer patients (Teenage Cancer Trust, CLIC Sargent and Teenagers and Young Adults With Cancer).
Crucially the summit also included parents and TYA cancer patients, all of whom were equally involved in reviewing and inputting into the strategy.
"This strategy will shape how and what research opportunities are offered to us and ultimately how we are treated as a patient group within the NHS.”
Max Williamson, an NIHR CRN Cancer Strategy patient representative for TYAs, said: “The sheer number of patient advocates involved in the development of the strategy means that this is truly an equal partnership between teenage and young adult cancer patients and professionals involved in treating us.
“This strategy will shape how and what research opportunities are offered to us and ultimately how we are treated as a patient group within the NHS.”
In 2015, the Independent Cancer Taskforce noted that, in comparison with children under 16 years, the outcomes for older teenagers and young adults are improving less rapidly, and that TYA cancer patients are less likely to participate in research (as stated in Achieving world-class cancer outcomes: a strategy for England 2015-2020). It recommended:
“NHS England should ask NIHR and cancer research charities to consider ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased. NHS England should set an expectation that all Centres or designated units treating TYA patients should aim to recruit at least 50% of those patients to clinical trials by 2025.”
In March 2017, the NIHR convened a summit meeting to explore ways to increase opportunities for TYA participation in NIHR Portfolio studies; to understand the structural and infrastructure factors that impact on TYA participation in clinical research and to develop combined stakeholder approaches to meet the Independent Cancer Taskforce recommendation that 50 per cent of TYA patients are involved in research studies by 2025.
Two years on, the summit met again on 5 April 2019 to assess progress against the strategy objectives, consider any new developments and to refresh the strategy.
Dr Amos Burke, NIHR CRN National Specialty Lead for Children and Young People’s Cancer, who opened proceedings and outlined the objectives for the day said: “In the two years since the first NIHR TYA summit there has been significant progress but much remains to be done.
“This summit was focused on making sure that the objectives are still fit for purpose and ensuring that the right stakeholders are engaged to ensure successful delivery.”
The morning session focused on reviewing the current strategy and assessing progress against the objectives from the viewpoint of the key stakeholders involved. A key achievement was the NIHR CRN establishment of a TYA cancer research nurse in each of the 15 LCRNs in England with posts available from 1 April 2019.
It also considered new developments such as proton beam therapy and the pioneering work of the Fostering Age Inclusive Research (FAIR) Trials working group (part of Accelerate, the key European organisation aiming to accelerate innovation in drug development for children and adolescents with cancer). FAIR advocates the development of more inclusive studies where the age of entry corresponds to the biological age range of the disease rather than the traditional age of consent.
The afternoon session featured interactive workshops where attendees were split into groups and tasked with formulating actions around the key new areas to be included in the strategy refresh.
The day ended with discussion on plans for updating the strategy and the establishment of a steering committee to oversee the different work streams which will include representatives from the key stakeholder organisations involved, as well as charities and patient and parent representatives.
"Change is never easy, but this kind of thoughtful strategic work is key to pushing down the barriers..."
Debbie Binner, patient advocate, who has worked with the FAIR Trials Working Group said:
“I was delighted to be involved with this conference and the development of this strategy. It was well thought out, targeted and ensured that we came out with some clear measurable, timed objectives.
“Removing the lower age range for clinical trials and the FAIR Trials work is extremely close to my heart as my own daughter suffered because of this cultural impediment. Change is never easy, but this kind of thoughtful strategic work is key to pushing down the barriers that currently prevent children and teenagers getting access to the newest treatments that are now coming down stream. This is an incredibly important piece of work and I’m extremely pleased to be part of it.”
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