Putting it into Practice

Title: Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement.
Author: Rachel M. Taylor, Jeremy S. Whelan, Faith Gibson, Sue Morgan, Lorna A. Fern, on behalf of the BRIGHTLIGHT Team, Young Advisory Panel (YAP) and Core Consumer Group (CCG) and National Cancer Research Institute Teenage and Young Adult Clinical Studies Group (NCRI TYA CSG).
Date Published: 2018
Reference: Research Involvement and Engagement 4:50
Are service users or carers authors: Yes

Abstract: Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same.

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Categories: journal article
children and young people
general principles of good practice
lessons from direct experience of involvement

Date Entered: 2019/01/14

Date Edited: 2019/01/14

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