Louca-Mai Brady

Introduction: Patient and public involvement (PPI) is an established way to improve the quality and impact of health and care research. All children have a right to have a say in decisions that affect them, and Young People's Research Advisory Groups are now an established approach for enabling young people's involvement in research. However, there is limited evidence considering how to evaluate such groups. In this article, we describe the process of co‐producing an evaluation of the Hertfordshire Young Person's Advisory Group (YPAG) hosted by the University of Hertfordshire, UK (UH) in collaboration with young group members. Methods: We provide an in‐depth account of how the team worked together, utilising a creative and collaborative approach to design the evaluation. Results: The findings show that researchers, young people and parents/carers value children and young people's involvement in research. Findings also demonstrate the benefits for young people of being a member of the group, such as the development of new skills. Conclusion: Co‐production of this evaluation was enabled through the adoption and practice of an approach that combined flexibility and creativity with appropriate resourcing. However, we also share the challenges with our approach, including complexities around data sharing. Nevertheless, we argue that co‐producing the evaluation enabled us to learn about the strengths of the group, while also highlighting helpful learning for the future planning of the group, and contributing to evidence on the importance of evaluating PPI. Patient and Public Involvement: Three young people (two aged 17; one aged 12) were equal members of the five‐person evaluation team, involved throughout alongside two UH researchers. During the 6‐month evaluation process, this team met 12 times (online or face‐to‐face). Additional discussions were conducted over email.

Background: Young people in the UK have poorer health and well-being than in many comparable countries. Integrated Care Systems (ICS) were set up across England in 2021 to enable health, social care and community organisations to work together and improve the health and wellbeing of local people. However ICSs face significant challenges including growing health inequalities, pressures on services and cuts to staff and funding.Approach: Based in an inner-city area with a very diverse population, high levels of poverty and limited support for young people the PANELS (PArticipation of under-served young people in North East London health and wellbeing Services) project explored how integrated care systems can best involve underserved young people. Taking a rights-based approach, the project focuses on the transition to adulthood (age 15-25) for young people most likely to face health inequalities.More information: https://www.communityactionredbridge.org.uk/panels-project.The project was funded by a UK National Institute for Health and Care programme development grant and hosted by a National Health Service Trust. It was developed and delivered collaboratively by young people, a community organisation and academic researchers.The overall aim of the project is to create a strong and lasting place-based partnership between young people and adults who work with them.Following a stakeholder mapping exercise and workshop, the project used a community of practice approach to develop a network of professionals who came together to explore what good and inclusive participation of young people in integrated care looks like in practice and explore new ways of working.Local young people were involved from the outset, from an initial workshop which led to two young people being co-applicants and part of the core project team, to a group of young advisors who were involved throughout the project, including co-producing an evaluation. Led by the community organisation and young advisors, the project took a flexible and inclusive approach to involving local young people in ways that worked for them, including engaging with existing groups and services as well as workshops.Results: Note: As the project is ongoing, this section will be updated for the conference programme.Emerging findings:‘Good’ participation needs to be meaningful, flexible, and trauma-informed, working with young people in ways that work for them.Place-based, co-production, and creative health approaches offer opportunities to positively address intersectional barriers and develop services that meet young people’s needs.The role of parents and carers needs further consideration as they can be both facilitators and barriers to young people’s participation.Involving voluntary and community organisations in collaborative opportunities can be challenging due to limited resources and ‘consultation fatigue’.Reorganisation and funding cuts at national and local level create challenges to sustained change.Implications: •Involving under-served young people has benefits for integrated care systems and health and care services, leading to services that better meet the needs of the young people who most need them.Inclusive, flexible and young people-centred approaches are essential for co-producing services with young people who are less often heard.

There is growing interest in whole systems-based approaches to obesity, yet little understanding about how these can be achieved or about the tensions inherent in navigating the social, emotional, and behavioural issues within behaviour change interventions. We were commissioned to evaluate a programme of place-based, whole-systems approaches to tackling obesity and health inequalities for adults, children and families in areas with higher-than-average obesity rates and socioeconomic deprivation. Underpinned by an embedded ethnography approach, this process evaluation explored how best to engage diverse communities in service delivery and development using evidence-informed approaches, and whether services can be co-produced with communities and people with lived experience. Our approach combined: focus groups and interviews with staff, service users, commissioners and other external partners (n=64); participant observation; membership of a Strategic Oversight Group; and qualitative research training for staff. This unique project demonstrates factors important for shaping a whole systems approach, including the value and challenges of community engagement, and the limitations caused by how services are commissioned. Consideration is needed regarding how systems and structures can facilitate or create barriers to ‘embedded’ research and the implementation of whole systems approaches, involvement and co-production, and take account of wider determinants of health and inequalities.

Introduction: This exploratory literature review seeks to examine the literature around commissioning processes in the co‐production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co‐production in service design and delivery? What are the contextual factors that influence these processes?Method: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008–2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty‐seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions.Results: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co‐production; navigating relationships and the collective voice.Conclusion: Commissioning processes were commonly a barrier to the co‐production of health and care services. Though co‐production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer‐term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed.Patient and Public Contribution: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement.

Background: Children and young people’s (CYP) involvement is an increasing priority in UK 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, UK. Methods: A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with YPAG 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.

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.

The case for children and young people’s involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults. This paper explores these issues in relation to a project undertaken for the James Lind Initiative on the availability, quality and reliability of existing data on young people’s involvement in studies supported by the National Institute for Health Research (NIHR). The project found that there was no systematic way of getting reliable and comparable information about which young people are involved in health research in England, what form that involvement may have taken or the impacts of involvement. There is a need to better collate and disseminate evidence on young people’s involvement in research, using both existing systems and processes, and the possible development of new metrics and measures. Not having this information risks children and young people’s involvement continuing to develop in a piecemeal fashion. Further research is needed about how, when and where children and young people are involved in health research, and about the impact of involvement on research and on the children and young people involved.