“We know that our voices are valued, and that people are actually going to listen”: co-producing an evaluation of a young people’s research advisory group

Abstract

Background Children and young people’s (CYP) involvement is an increasing priority in healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults. Underpinned by children’s rights and a co-production ethos this paper, co-authored with young evaluators, explores the learning from a co-produced evaluation of eyeYPAG, a young persons’ research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London. Methods A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with young group members, their parents and carers, researchers, group facilitators and funders. Qualitative data was analysed using a collaborative reflexive thematic analysis approach. Quantitative data, limited by the small number of participants, was analysed in Excel and reported as descriptive data. Results: CYP valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators reflecting on how much they had learnt from working with the YPAG. All participants talked about the importance of impact, feeling that CYP are making a difference to research, as well as CYP’s right to be involved. Effective planning and facilitation were key to the success of the group, in relation to accessibility and the development and delivery of sessions both online and in-person. Resourcing and administration were key challenges to this, as was engaging researchers who were not already converted to the public involvement cause. As the nature of a YPAG is that it primarily focuses on advising researcher-led projects, co-production was identified as something that the group was ‘working towards’, including through this evaluation. Co-producing with CYP involves building up knowledge, confidence and acknowledging power dynamics. Conclusions: Co-producing an evaluation enabled us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in the development of that evidence. An ethos of co-production and children’s rights helped to shift the balance of power and develop more engaging and inclusive ways of working.

‘Including us, talking to us and creating a safe environment’—Youth patient and public involvement and the Walking In ScHools (WISH) Study: Lessons learned

“…Co‐production is ‘an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge’ 61 . To move the consultative PPI activity outlined in this manuscript towards co‐production, young people could be involved in setting priorities for research, data collection and analysis, developing tools and/or working collaboratively on study outputs 30,62 . In recent years, there has been growing interest in co‐production and these methods can enhance the effectiveness of an intervention by considering the perceived needs of the end user and the context within which an intervention will be delivered 63 .…”

“…61 To move the consultative PPI activity outlined in this manuscript towards co-production, young people could be involved in setting priorities for research, data collection and analysis, developing tools and/or working collaboratively on study outputs. 30,62 In recent years, there has been growing interest in coproduction and these methods can enhance the effectiveness of an intervention by considering the perceived needs of the end user and the context within which an intervention will be delivered. 63 While co-production in physical activity research is relatively new and continually evolving, 64 if we are to improve physical activity levels among adolescents, perhaps we need to reconsider a new approach to the design of school-based interventions.…”

“I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce

“…While no studies to date have focused on the labour of the PPI workforce, case studies and evaluations of PPI practice include occasional references to the skills and expertise required in leading and managing PPI. PPI workers have variously been described as 'brokers' who mediate and enable learning between research and lay spaces (43,44); skilled facilitators enabling inclusive practice (45)(46)(47); and 'boundary spanners' who navigate the complexities of bridging researchers to communities or public contributors through ongoing relational work (38). Research on the overlapping eld of public engagement in UK universities may be instructive in eshing out some of the challenges associated with this role: public engagement professionals (PEPs) have been discussed through a similar lexicon of boundary-spanning or seeking to mediate between academics and publics in the service of a publicly accountable university.…”