Guiding, sustaining and growing the public involvement of young people in an adolescent health research community of practice

Abstract Background Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co‐producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. Methods A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot‐testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. Results The co‐production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. Conclusions This study investigated the process of co‐producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot‐test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co‐production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. Public Contribution Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co‐author.


| INTRODUCTION
The principle of youth participation is well established and enshrined in international policy, including the World Health Organization Global Standards for Quality Healthcare Service for Adolescents, 1

and the UN
Convention on the Rights of the Child. 2 Multistakeholder partnerships between organizations and young people can help embed meaningful engagement with young people across the health system, and progress health as one of the sustainable development goals. 3,4 Youth participation is increasingly recognized as fundamental to achieving effective adolescent health policy and services. [5][6][7] While the benefits of youth participation in research and translation are considerable, realizing this benefit to adolescent health and well-being remains a challenge. Greater collaborative practice, youth-led approaches and adult stakeholder understanding and commitment are needed. [8][9][10][11][12][13] These require consideration of how existing institutions, processes and practices of research and translation that are adult-centric can engage meaningfully with young people, their knowledge and needs. 14,15 Pragmatic ways to achieve ongoing youth engagement in multiple settings are under-researched.
Youth 'consultations' or advisory mechanisms are increasingly common. 16, 17 Yet youth engagement in research too often commences after research questions, design and protocols are already defined, rather than involving young people from the beginning.
The expanding range of children's and young people's contributions to public involvement and engagement activities in health-related research requires researchers to adopt pragmatic and flexible approaches which can 'offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves'. 18,p.20 Instead of framing, and subsequently evaluating, public involvement in health research as an intervention, or output, there is increasing recognition of the value of continuous reflection, based on dialogue and learning between researchers and the public. 19,20 Such critical public involvement research seeks to explore the complexity of the relationship between researchers and the public, using methods to illuminate (and not simply measure) the complexity of dialogue. 19,p.6 Ozer et al. 21 argue that advancing youth participation in adolescent health research requires rigorous practice-based evidence supported by 'research-practice partnerships'. Such partnerships are characterized by mutual learning, long-term commitments and trust-based relationships. 22 Identification of approaches that facilitate a research-practice partnership with young people is needed, to inform the much-needed design, delivery and translation of adolescent health research. This partnership style first started in the education sector but has since broadened to areas such as child welfare and mental health. 23,24 In Australia, despite inclusion in policy commitments, 25 there is currently no state or national mechanism to guide, sustain and grow, the public involvement of young people across adolescent health research, policy and practice.

| Research design
The Living Lab methodology brings together a broad range of stakeholders in ongoing phases of co-creation in real-life settings and communities to implement effective responses to complex social and cultural phenomena. 27 Living Labs create durable structures for integrating co-research with co-design over time. 28,29 Using qualitative methods of multiple workshops, a roundtable discussion and an online survey, young people and other stakeholders took part in an iterative process to identify and respond to key issues for youth engagement in adolescent health research. 30 Our overall aim was to identify how to guide, sustain and grow the public involvement of young people in an adolescent health research community of practice

| Results
Phase 1 involved one youth workshop (n = 10; four males, six females) and one intergenerational roundtable (adults, n = 30; youth, n = 8). Attitudes towards and experiences of youth engagement in adolescent health research were identified from these activities and then grouped into three sets of values ( were discussed and developed to show the range of young people who might take part in the Commission (covering key aspects such as age, gender, location, technology use and background). Next, the relationship between these personas and the proposed Commission, known as 'user journey' in design research, was explored in response to six key questions: (i) How do they hear about the Commission? (ii) What would motivate them to get involved? (iii) How much time do they have to contribute? (iv) What types of events and activities would interest them? (v) What different types of incentives (e.g., reimbursement, recognition, skill-building, networking) would keep them engaged? (vi) Why would you recommend the Commission to others? A draft model was discussed, revised ad refined with WH&Y investigators and commissioners to consolidate the model features.

| Results
All the young people involved in Phase 1 were invited to participate in the Phase 2 workshop. Seven of those young people (five males and two females aged between 13 and 23 years) took part. The model generated (depicted in the right-hand column of Table 2) describes the five main model features that were identified as central Ethical practices -Producing a common language and meaningful technologies.
-Actively engaging with all stakeholders to ensure the language used, activities planned, and technologies created are easy to understand, easy to join in with and make young people feel safe, comfortable and welcome.

Second value set: Diversity and Inclusion
Questions -How can you best support young people and their networks in the co-design of health research and translation? -Is your co-design approach youth-centred, strengths-based and focused on maximizing opportunities for health and well-being?
Ethical practices -Co-designing projects, systems and services.
-Entering into engagement and collaboration with an open mind and understanding that young people's insights may test your thinking, challenge your assumptions and shift your goals.

Third value set: Equity and responsiveness
Questions -In your communications are you using language, information and data that are inclusive, clear and understandable for a diversity of young people? -Are your material technologies (like consent forms) and social activities (like workshops) inclusive and respectful of young people's diverse, identities, abilities and skills?
Ethical practices -Embedding a shared, intergenerational responsibility.
-Developing collaborative processes that give stakeholders a sense of mutual ownership and shared responsibility and genuine opportunities to contribute and feedback.

| Results
The results for Phase 3 are aligned with key dimensions of our partnership model features to demonstrate how previous research phases informed this phase.
T A B L E 2 Co-produced framework and partnership model alignment

WH&Y CRE ethics of engagement (Phase 1) WH&Y Commission partnership model features (Phase 2)
Does the structure and governance of your work support young people's participation and contribution in meaningful ways?
Structure and governance: The WH&Y CRE will provide organizational support and processes to enable knowledge sharing between the WH&Y Commission and diverse stakeholders from a variety of ages, backgrounds and sectors. This spans consultation and partnership in decision-making, such as new research and funding proposals.
How can you best support young people and their networks in the codesign of health research and translation?
Membership: The WH&Y Commission will offer a flexible range of ways for young people to be involved according to their interests and capacities (including a core group and a broader network). Participants will be provided with relevant training and have the opportunity to request or provide peer-based learning on topics of interest.
In your communications are you using language, information and data that are inclusive, clear and understandable for a diversity of young people?
Communication: The WH&Y Commission will combine online and offline modes of communication to reflect the multiple places and times young people like to connect. Co-creating and communicating outputs will support shared learning and capacity building between health experts, interdisciplinary researchers and young people.
Are there ongoing opportunities for young people to hear about progress and voice their ideas and concerns?
Recruitment and reimbursement: The WH&Y Commission will explore novel ways for recruiting a diversity of young people and representation from marginalized or excluded groups. Reimbursement processes, the contribution of members and research impact over time, will all be clearly communicated.
Are your material technologies and social activities inclusive and respectful of young people's diverse, identities, abilities and skills?
Activities: The WH&Y Commission will offer a variety of inclusive and fun activities which enhance the capacities of young people and make a meaningful contribution to research, policy and practice. Online and in person activities will engage with young people's interests, support networks and organizations to maximize opportunities for impactful health and well-being initiatives. Collaborative approaches to research design, delivery and translation will be prioritized.
Is your co-design approach youth-centred, strengths-based and focused on maximizing opportunities for health and well-being?  collaborations. Finally, that longer-term commitments with young people are vital to support health research capacity-building and priority-setting beyond short-term funding cycles. These learnings correspond with calls for ongoing youth-adult partnership research to focus on factors for success and adaptability to local contexts. 37 We, therefore, seek to inspire national and international research programmes to discover how to guide, sustain and grow the public involvement of young people tailored to their specific contexts. We also plan to develop the digital infrastructure and participation literacies required to extend our WH&Y Commission to other urban and regional areas, so as to expand the 'networked' capabilities of our community of practice in relation to diverse people, places and SWIST ET AL.
| 3093 platforms. 40 This vision could be implemented by linking with other organizations and research projects-both in Australia and overseasso as to advance the public involvement of adolescents across health research, policy and practice.

| CONCLUSION
The project process documented in this paper was a complex, multiyear study about co-researching and designing a youth-engaged adolescent health research community of practice.