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Involving young people with cancer in research The National Cancer Research Institutes Teenage and Young Adult (TYA) Core Consumer Group (CCG) - a new and evolving model
Lorna Fern1, James Ashton2, Katie Brooman2, Carol Irving3, Hannah Millington2, Carol Starkey2, David Wright4, Jeremy Whelan1
1University College Hospital, London, UK, 2National Cancer Research Institute Teenage & Young Adult Core Consumer Group, London, UK, 3University Hospitals of Leicester, Leicester, UK, 4Christie Hospital NHS Trust, Manchester, UK
Background
Involving patients as partners in research has become an integral part of the research process, guided by national policy and a key requisite of many funding bodies. The National Cancer Research Institute (NCRI) and National Cancer Research Network (NCRN) have a consumer model whereby up to three patients/ representatives attend tumour specific Clinical Study Group meetings. They belong to, and are supported by a wider NCRI Consumer Liaison Group which meets regularly.
The NCRI TYA Clinical Studies Development Group (CSDG) is a national Group promoting and developing research for cancer patients aged 13-24 years. The traditional NCRI/NCRN consumer model is unsuitable for TYA due to the spectrum of tumour types, age range, and life stage commitments. Furthermore, CSDG meetings would not deliver information in an age appropriate format and may be intimidating for TYA. The Group felt it was appropriate to allow TYA themselves to develop their model of involvement.
Method
The model evolved from a showcase day to a consultation exercise Research 4U delivered by the young people to over 300 TYA. This presentation/poster will describe the creation of the model, feedback from the consultation and future involvement.
Results
60% of TYA prioritised reducing the time to diagnosis as the most important area of research, followed by survivorship and late effects of treatment (22%). Place of treatment for TYA was prioritised by 6.6% of patients, and research surrounding clinical trials and information collecting were prioritised equally by 6.2% of TYA.
Conclusion
TYA are interested in research and keen to engage with the NCRI Group. While their research priorities are similar to older adults their needs remain clearly different. The next stage of this model is to expand the CCG for broader tumour and ethnic diversity, and to develop age appropriate training to actively engage TYA in our research process.
