Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement

• Published in: Research involvement and engagement 2018-12, Vol.4 (1), p.50-50, Article 50
• Main Authors: Taylor, Rachel M, Whelan, Jeremy S, Gibson, Faith, Morgan, Sue, Fern, Lorna A
• Format: Article
• Language: English
• Subjects: Adolescents; Angina pectoris; Cancer; Data analysis; Medical research; Patients; Recruitment; Researchers; Retention; Studies; Teenagers; Young adults
• ISSN: 2056-7529; 2056-7529
• DOI: 10.1186/s40900-018-0135-x

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. Young people with cancer, broadly those aged 13-24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as 'vulnerable', 'hard to reach' and 'difficult to engage', and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study 'BRIGHTLIGHT', we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an ea