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Abstract
Background Patient and public involvement is an integral component of clinical research. A YPAG is group of young people with active involvement in the design and conduct of clinical research aimed at CYP.1 2 Active collaboration with a YPAG can be mutually beneficial and can have a positive impact on study design and conduct.2 3 We report on the involvement of young people, their influence on study design and the perceived benefits to members.
Method A UK secondary school was approached and ten 16–17 year old students agreed to form a YPAG. Three 1-hour sessions were planned involving arts-based activities to explore key challenges, predetermined iteratively by the research team. Activities involved group work to explore and propose solutions for effective CYP recruitment and data collection, produce a study logo and review the plain English summary.
Results YPAG members produced insightful arts-based posters containing important ideas and concepts that were incorporated into the study design. A study logo was created, diaries and electronic communication methods to collect data were added and a variety of age-based leaflets were added to the recruitment strategy. Members reported several benefits from the sessions, including enhanced creative and problem-solving skills and members enjoyed the teamwork and collaborative approach.
Conclusion YPAG involvement resulted in meaningful improvements to research design and members gained new knowledge, transferrable skills and improved confidence. This experience should help inform YPAG involvement in future research.
References
National Institute for Health Research (2021) NIHR resource for public involvement - Involving children and young people as advisors in research. Available at: https://www.learningforinvolvement.org.uk/?opportunity=nihr-involving-children-and-young-people-as-advisors-in-research Accessed 06-Dec-2021
Rouncefield-Swales A, Harris J, Carter B, Bray L, Bewley T, et al. (2021) Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review. PLOS ONE 16(6): e0252774. https://doi.org/10.1371/journal.pone.0252774
Abrehart N, Frost K, the Young Persons Advisory Group. et al. (2021) ‘A little (PPI) MAGIC can take you a long way’ : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961). Res Involv Engagem 7, 2 https://doi.org/10.1186/s40900-020-00243-0.
Conflict of interest GAW received funding to conduct this project through a post-doctoral bridging fellowship. HT, TB, EM and RT received financial compensation, in line with NIHR/INVOLVE guidelines, for their involvement in the YPAG group.
Funding This project formed part of a post-doctoral bridging fellowship supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East Midlands (ARC EM) and Health Education England. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
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