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Research funders urged to listen to children's views

Research funders urged to listen to children's views

New report outlines priorities to those that matter the most

The Founder of The Little Princess Trust has urged other research funders to use a new report featuring the thoughts of child cancer patients to help influence their future work.

Wendy Tarplee-Morris was speaking in London at the launch of the final report of the Children’s Cancer Priority Setting Partnership (PSP).

The report is the culmination of a collaborative project that began in 2019, when The Little Princess Trust and the Children’s Cancer and Leukaemia Group (CCLG) partnered with the James Lind Alliance (JLA) to identify the research questions that are most in need of answering.

Its aim was to produce a list of the 10 most important research priorities in children's cancer, from the perspectives of patients, their families and carers, and the health professionals who treat and care for them.

The final report of the James Lind Alliance Children's Cancer Priority Setting Partnership.

Wendy, who was a member of the steering group, saw first-hand the rigour that went into every element of the process to ensure the outcome was as accurate and valuable as possible.

Speaking in London last week, Wendy said: “Now that we have this fantastic tool, it is important that we as funders use it to measure against our own research strategies’.

“And we would encourage other funders, and indeed researchers, to do the same.”

The launch event was told that topics of healthcare research in children’s cancer are often driven by the interests of researchers and the pharmaceutical industry, while what is most important to children, their families and the professionals who care for them, may sometimes be overlooked.

Recognising the need for input from people with lived experience of childhood cancer, CCLG and LPT funded the PSP so that researchers and research funders are aware of the issues that matter most to the people who could benefit from the research.

Following a rigorous process of surveys, interviews and workshops designed by the JLA – a non-profit making initiative that brings together patients, carers and professionals to identify and prioritise unanswered questions that they agree are the most important - the top priorities for children’s cancer research were found.

Susie Aldiss said the research priorities 'belong to everyone'.

Young patients, childhood cancer survivors, parents, carers and family members, as well as cancer professionals were invited to participate in this process and there was a special emphasis on talking to young children to make sure their opinions were heard.

The final questions reflect the breadth of the cancer experience for children and families - including diagnosis, relapse, experience in hospital, support during and after treatment and the long-term impact of a cancer diagnosis.

The findings were presented at the launch event, which brought together charities, researchers and research funders, as well as those affected by childhood cancer.

Members of the project team spoke about the importance of the PSP, while the audience heard from a childhood cancer survivor and parents of childhood cancer patients about what the report means to them.

Phil Brace, Chief Executive of The Little Princess Trust, with Wendy Tarplee-Morris.

Phil Brace, Chief Executive of The Little Princess Trust, said: “We were delighted to have been able to joint fund the PSP with CCLG as we always knew that the results would be vital in ensuring all those involved in funding research and supporting children with cancer were aligned and focused on what is important to those affected the most by childhood cancer.”

Ashley Ball-Gamble, CEO CCLG, said: “The PSP report truly represents a new beginning in children’s cancer research as, for the first time, we know what is important to children with cancer and can focus our work and resources accordingly.

“It’s now imperative that we do so by turning the priorities into actual research.”

Faith Gibson, Susie Aldiss and Rachel Hollis, PSP coordinating team members attending the launch said: “We were really pleased how well the report was received on the evening - now we need action.

“This action can be taken by any member of the children’s cancer community as these research priorities belong to everyone."

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The MBE for voluntary groups was awarded to The Little Princess Trust by Her Majesty Queen Elizabeth.