eprintid: 10186891 rev_number: 7 eprint_status: archive userid: 699 dir: disk0/10/18/68/91 datestamp: 2024-04-25 14:39:04 lastmod: 2024-04-25 14:39:04 status_changed: 2024-04-25 14:39:04 type: article metadata_visibility: show sword_depositor: 699 creators_name: Taylor, RM creators_name: Whelan, JS creators_name: Gibson, F creators_name: Morgan, S creators_name: Fern, LA title: Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: Insights from 10 years of user involvement ispublished: pub divisions: UCL divisions: B02 divisions: C10 divisions: D19 divisions: D16 divisions: D12 divisions: G88 divisions: G21 keywords: Adolescents, BRIGHTLIGHT, Cancer, Consumers, Dissemination, Patient and public involvement, Recruitment, Retention, Teenagers, Young adults note: © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. abstract: Background 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. Methods 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. Results 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 early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Conclusions Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies. date: 2018-12-27 date_type: published publisher: Springer Science and Business Media LLC official_url: http://dx.doi.org/10.1186/s40900-018-0135-x oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1618902 doi: 10.1186/s40900-018-0135-x medium: Electronic-eCollection pii: 135 lyricists_name: Taylor, Rachel Margaret lyricists_name: Whelan, Jeremy lyricists_name: Patel, Nishma lyricists_id: RMTAY31 lyricists_id: JSWHE70 lyricists_id: NVPAT81 actors_name: Patel, Nishma actors_id: NVPAT81 actors_role: owner funding_acknowledgements: RP-PG-1209-10013 [Department of Health] full_text_status: public publication: Research Involvement and Engagement volume: 4 number: 1 article_number: 50 event_location: England issn: 2056-7529 citation: Taylor, RM; Whelan, JS; Gibson, F; Morgan, S; Fern, LA; (2018) Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: Insights from 10 years of user involvement. Research Involvement and Engagement , 4 (1) , Article 50. 10.1186/s40900-018-0135-x <https://doi.org/10.1186/s40900-018-0135-x>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10186891/1/Involving%20young%20people%20in%20BRIGHTLIGHT%20from%20study%20inception%20to%20secondary%20data%20analysis%20insights%20from%2010%09years%20of%20user%20involve.pdf