Setting the research agenda with young people


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NCRI Teenage & Young Adult Core Consumer Group1
National Cancer Research Institute, London, United Kingdom

Abstract

Young people are frequently categorised as ‘hard-to-reach’, ‘difficult-to-engage’, ‘inaccessible’, ‘challenging’ and consequently often unfairly overlooked for patient involvement.

 

The NCRI Teenage and Young Adult (TYA) Clinical Studies Group develop research for cancer patients aged 13-24. Appropriate patient representation would not have been achieved using the traditional NCRI consumer model would because of the range of tumour types, ages, ethnicity and life stage commitments to be accounted for. Furthermore, professional meetings may fail to deliver information appropriately and may be intimidating for teenagers and young people.  We asked TYA to develop their own model of involvement with guidance from the group.

 

Beginning as a ‘showcase-day’, five TYA created a ‘core-consumer-group’ (CCG). In addition to an annual consulation exercise to over 200 TYA, the CCG are involved in working as advisors; co-researchers;co-facilitating workshops; conducting peer-interviews;reviewing transcripts;data-analysis and co-authoring publications.

 

During a workshop where TYA were invited to describe their experiences of cancer care, analysis of peer-to-peer interviews conducted by the CCG shows depth and quality of data. Participants revealed intimate details about their cancer experiences and felt it was beneficial to have the CCG working as co-researchers:

 

            ‘… you[participants] could relate to them [CCG] on a personal level…it created a comfort zone which enabled you to talk easily about all aspects of your treatment and also the emotional side…because you are safe in the knowledge they have experienced the same’

 

A second consultation exercise has confirmed that TYA prioritise improving the time to cancer diagnosis, followed by research surrounding survivorship.  

Involving TYA in research can be achieved by adopting novel ways of engaging and communication with young people; engaging with young people facilitates this. This presentation will describe some of the methods and results of research undertaken by the CCG.