Involving young people with cancer in research: The National Cancer Research Institute’s Teenage and Young Adult (TYA) Core Consumer Group (CCG) – a new and evolving model

2010 Conference

Abstract:

Patient involvement is at the cornerstone of successful research, guided by national policy and is mandatory for many funders. The National Cancer Research Institute (NCRI) maintains a ‘consumer’ model whereby three patients/representatives attend tumour specific meetings and are supported by a wider NCRI Consumer Liaison Group.

The NCRI Teenage and Young Adult (TYA) Clinical Studies Group develops research for cancer patients aged 13-24. The traditional NCRI consumer model was thought unsuitable for TYA where professional meetings would fail to deliver age appropriate information and may be intimidating. It was felt appropriate to allow TYA to develop its own unique model of involvement with guidance from the group.

Beginning as a showcase day, five TYAs created a core-consumer-group. Two consultation exercises to 500 TYAs have been completed; the core group work as co-researchers on projects and disseminate results. Involving TYAs in research is challenging but this is outweighed by the value of their experiences. TYAs are interested and keen to engage. Their research priorities are similar to older adults but their needs remain clearly different. Barriers which TYAs face within healthcare systems are also evident when involving TYAs in research.

This presentation describes the creation of the model, consultation results, future directions and challenges.