Research Involvement and Engagement最新文献

{"title":"Every VoiceCAN: the journey and contributions of a grassroots regional cancer advisory network.","authors":"Kathleen Wilkins, Harry Thomas, Stacey Ann Rich, Suiyin Cheah, Craig Underhill","doi":"10.1186/s40900-026-00988-0","DOIUrl":"https://doi.org/10.1186/s40900-026-00988-0","url":null,"abstract":"<p><strong>Background: </strong>Despite the benefits associated with participation in cancer clinical trials, participation rates in rural, regional and remote Victoria (Australia) are low. To address this issue, an $18.6 million funded project called ReViTALISE was established. One consumer representative for the project saw a need to establish a supportive network of consumers, and to provide a voice for rural, regional and remote people with lived experience of cancer. Many consumer advisory groups are established by organisations (top-down model) when the need arises and often focus on discrete projects. The Every Voice Consumer Advisory Network was established from the bottom up with its members enjoying the freedom to be involved in projects that align with their values. This case study commentary describes the journey of the Every Voice Consumer Advisory Network, their contributions to date, and their future directions. It also highlights what happens when a consumer advisory network is empowered to set the agenda. It is often difficult to discern the contribution of consumer co-authors in academic texts through editing that complies with the stylistic expectations and conventions of academia. This comes at the cost of disempowering consumer co-authors. To ensure power sharing, the text presented here is predominantly in the original form as written by the chair and co-chair of the group.</p><p><strong>Main text: </strong>Members of the network represent five distinct regional health districts. They are providing their input from a lived cancer experience perspective to 18 separate organisations and programs across Victoria, Australia. Through the funded administrative support of the project they are embedded within, they are able to connect to complementary programs outside of the organisation. This has led to unintended and beneficial connections for the project. The Every Voice Consumer Advisory Network is investigating options to ensure its sustainability beyond the current funding period.</p><p><strong>Conclusion: </strong>Every Voice Consumer Advisory Network has carved out a niche position of rural and regional voices of lived cancer experience in projects across the state. With the administrative support of a funded project office, the group has engaged with multiple organisations and projects, building unexpected connections for the project. This approach may benefit other organisations considering embedding consumer engagement into their own work.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13637301/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149115980","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From Youth Advisory Boards to subject matter research consultants: transforming youth participation in research advising and practice.","authors":"Rahim Z Miller, Zoë Njemanze, Miles C Perry, Adrian Y Williams, Judah Dean, Anderson Schlupp, Kathryn E Muessig, Lisa B Hightow-Weidman","doi":"10.1186/s40900-026-00958-6","DOIUrl":"10.1186/s40900-026-00958-6","url":null,"abstract":"<p><strong>Background: </strong>Youth Advisory Boards and Community Advisory Boards are widely used to promote public involvement in research involving adolescents and young adults. These structures can improve the relevance, acceptability, and ethical grounding of research; however, advisory models often remain constrained by structural limitations, including inconsistent or inadequate compensation models, limited decision-making authority, grant-dependent instability, and late-stage engagement. These constraints may unintentionally position youth as episodic consultants rather than sustained research partners.</p><p><strong>Main body: </strong>This commentary describes the development of the Subject Matter Research Consultant (SMRC) model at the Institute on Digital Health and Innovation (IDHI), a formalized youth-engagement structure designed to move beyond traditional advisory-board participation. Emerging from earlier youth advisory and research consultant efforts, and formalized following IDHI's establishment in 2022, the SMRC model positions youth as part-time employees embedded across the research lifecycle. Core components of the model include paid employment, structured training and mentorship, centralized coordination, and meaningful involvement in research activities from study design through dissemination. Early implementation feedback suggests that SMRCs perceive the role as beneficial to their academic and professional development, with reported benefits including increased research skills, expanded professional networks, greater confidence contributing to research teams, and increased interest in health-related careers.</p><p><strong>Conclusion: </strong>The SMRC model illustrates how institutional investment in youth engagement can transform youth participation from episodic consultation into compensated, capacity-building research partnership. By formalizing youth roles through employment and sustained integration across projects, this model offers a practical framework for strengthening youth-engaged research systems. Continued evaluation is needed to assess scalability, funding sustainability, retention, and the model's impact on research quality, community trust, and health outcomes.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13637214/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149115918","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Building recurring public and patient involvement in adult autism psychiatry and neurodevelopmental research: lessons from the first year of a patient panel and advisory board.","authors":"Kerstin Erdal, Tomas Larson, Eva Billstedt","doi":"10.1186/s40900-026-00990-6","DOIUrl":"https://doi.org/10.1186/s40900-026-00990-6","url":null,"abstract":"<p><p>Public and patient involvement (PPI) is increasingly emphasized in health and autism research, yet involvement is often organized around individual research projects. Less is known about the practical and organizational processes involved in developing recurring PPI structures across clinical and academic settings. This paper describes and critically reflects on the establishment, implementation, and first-year experiences of two recurring PPI structures in western Sweden: a Patient Panel linked to an adult autism psychiatry service and a Neurodevelopmental Disorders (NDD) Advisory Board based at the University of Gothenburg. The two structures followed different implementation pathways. The Patient Panel was initially anchored to an ongoing research programme and involved autistic adults receiving psychiatric care, whereas the NDD Advisory Board was established from the outset as a broader forum bringing together researchers and representatives of patient and user organizations. First-year activities included review of research materials, ethical and methodological reflection, intervention development, discussion of research findings and clinical service development, and input into broader neurodevelopmental research questions. Contributor input resulted in identifiable changes to research procedures and intervention content, although involvement remained predominantly advisory and final decision-making authority remained with researchers, project leads, or clinical management. Implementation highlighted the importance of institutional context, organizational support, preparation, accessibility, compensation, and mechanisms for follow-up. Establishing the clinically embedded Patient Panel required iterative development of procedures concerning recruitment, data protection, compensation, and organizational responsibilities, whereas the university-based Advisory Board was administratively more straightforward to establish. Across both structures, governance, systematic documentation and follow-up of recommendations, and shared decision-making remained underdeveloped. Considered in relation to AASPIRE principles, several participatory practices were established, while important gaps remained in governance, accessibility procedures, and involvement across research stages. These experiences demonstrate that recurring PPI activities can be established in both clinical and academic settings, while highlighting that their establishment should not be equated with long-term sustainability or institutionalization. Developing sustained PPI requires ongoing attention to organizational procedures, resources, accountability, accessibility, and the distribution of decision-making authority.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13632358/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149115994","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenges and possibilities of public and patient involvement for early-career researchers: pedagogy, practice and data governance.","authors":"Adam Daly, Arthur Templeman-Lilley, Isobel Walsh, Alex Neuroth, Kate Molloy, Veronica Lambert","doi":"10.1186/s40900-026-00979-1","DOIUrl":"10.1186/s40900-026-00979-1","url":null,"abstract":"<p><strong>Background: </strong>Early-career researchers face unique challenges in implementing effective and meaningful public and patient involvement (PPI) in their research. These barriers prevent early-career researchers from accessing the full benefits of effective PPI and often leads to tokenistic inclusion, which disempowers public and patient contributors. Therefore, there is a critical need to explore the possibilities of how to better support early-career researchers in achieving effective involvement of the public and/or patients.</p><p><strong>Main body: </strong>Pedagogy, practice, and data governance represent three areas of PPI that present both challenges and possible opportunities to support early-career researchers. Regarding pedagogy, PPI requires deeper integration into research education as a tool which can be utilised to enhance research across disciplines. Moreover, curriculum development and delivery must align with the tenets of the field by actively involving public and patient contributors as co-educators. Regarding practice, early-career researchers often struggle with limited resources and the difficulty of reaching diverse populations who may not benefit from traditional involvement techniques. Creative involvement strategies offer an opportunity to expand early-career researchers' repertoire of techniques to better empower contributors. Finally, data governance is an increasingly complex yet critical consideration in PPI. Early career researchers can feel ill-equipped to navigate these complexities alongside PPI contributors. We suggest a new framework to support early-career researchers in navigating this process with PPI contributors to ensure equitable and safe data governance.</p><p><strong>Conclusion: </strong>Public and patient involvement poses many challenges to early-career researchers. However, addressing these difficulties within pedagogy, practice and data governance provides possibilities for better supporting researchers in collaborating meaningfully with PPI contributors to produce more rigorous and impactful research.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13621467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149082316","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).","authors":"Brittany Gerber, Gillian R Currie, Jaslene Atwal, Sam Atwal, John Bang, Kayla Caddy, Lisa George, Anna Goncharova, Morgan Harris, Janna Hart, Betts MacDonald, Lauren McClinton, Trish Snyder, Natasha Trehan, Alejandra Van Dusen, Erik Van Dusen, Kira Young, Jennifer Wilson, Deborah A Marshall","doi":"10.1186/s40900-026-00982-6","DOIUrl":"10.1186/s40900-026-00982-6","url":null,"abstract":"<p><strong>Background: </strong>To align with good practices in patient-oriented research, academic researchers who are involving patients in research must understand what values are important to patients, what motivates involvement in research and what patients hope to achieve by partnering in research. In this commentary, we add to the literature on creating a shared understanding with patient partners by describing our approach to co-creating a shared vision in a patient-partnered research project as a case example of patient and public involvement in research.</p><p><strong>A case example: </strong>This example is embedded within the Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, where we co-created a value framework with patients and parents to capture the ways that childhood arthritis affects families. We partnered with Cassie + Friends to identify and select patients and parents from across Canada who were interested in joining the project as research partners. The research partners included seven young adults and eight parents of children with childhood arthritis. At the outset of the project, we conducted a patient-engagement process with the patient and parent research partners to create shared vision, whereby we sought to understand: (1) the \"why\" for partnering, and (2) the values they wanted to guide the research partnership. Through this process, we jointly identified the patient and parent research partners' motivations, which spanned five related categories: building knowledge and awareness, making a positive difference, community building, advocacy, and personal growth. We also co-created guiding values for our collaborative work, which included openness, safety, solidarity, support, empathy and respect for different journeys.</p><p><strong>Conclusions: </strong>This shared vision sets the stage for meaningful engagement: guiding values inform interactions while understanding motivations enhances and enriches the research. We have provided a case example of how we co-created a vision and set our project team up for meaningful engagement. This process has allowed us to develop strong, trusting and ongoing relationships between researchers and the research partners and provides an example that other researchers can adopt and adapt in their settings to co-create shared vision for their patient partnered projects.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13621602/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149082298","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translating scores into meaning: a co-produced forum for patient-reported outcome measure interpretation in pediatric congenital heart disease.","authors":"Jana Willems, Anna Eyrich, Jens Terjung, Alina Stricker, Vera König, Alienor Ringwald, Petra Huth, Brigitte Stiller, Thorsten Langer, Christoph Zürn","doi":"10.1186/s40900-026-00981-7","DOIUrl":"10.1186/s40900-026-00981-7","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) and co-production are intended to increase the relevance and uptake of health research, yet structured ways of jointly interpreting patient-reported outcome measure (PROM) data in real time remain limited. We developed and tested a PROM-anchored participatory forum within a longitudinal pediatric congenital heart disease (CHD) study.</p><p><strong>Methods: </strong>The forum was co-developed and co-delivered by a patient organization and a university hospital as an explicit integrated knowledge translation (iKT) episode. Interim Pediatric Quality of Life Inventory™ Cardiac Module (PedsQL CM) results were presented in a plain-language life-course graphic and discussed in two rounds entailing small-group reflection and prioritization. Data sources included facilitator notes, plenary clusters, poll outputs, post-forum evaluation responses, and baseline PROM patterns. We took a framework-guided thematic approach and adapted joint displays to integrate qualitative and quantitative data.</p><p><strong>Results: </strong>Twenty families participated. The format enabled participants to contextualize aggregated PROM findings in relation to everyday life, and to identify where quantitative patterns resonated with lived experience and where additional nuance was needed. The forum produced co-produced interpretation memos, a prioritized action list, an implementation and adaptation package pack, and the family-facing dissemination figure called the \"Quality-of-Life Tree\". Participants highlighted transition-sensitive concerns, emotional burden, care coordination, and the need for child-friendly explanations and identifiable points of contact. The process was perceived as comprehensible and useful.</p><p><strong>Conclusions: </strong>A PROM-anchored participatory forum can make interim outcome data usable before the end of data collection and translate them into shared interpretation, action planning, and family-friendly dissemination. The approach offers a transferable model for linking PROM measurement, participatory interpretation, and follow-up in pediatric care research.</p><p><strong>Trial registration: </strong>German Clinical Trials Register (DRKS), DRKS00028565. Registered on March 30, 2023.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13621704/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149076143","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"EXCEL-Punjabi: the process of using a community based participatory research approach for a culturally-tailored exercise oncology intervention.","authors":"Mannat Bansal, Imrose Bhullar, Sarbjit Jawandha, Chandan Sangha, Jagbir Kaur, Gurleen Brar, Tanvir C Turin, Meghan H McDonough, S Nicole Culos-Reed","doi":"10.1186/s40900-026-00976-4","DOIUrl":"10.1186/s40900-026-00976-4","url":null,"abstract":"<p><strong>Background: </strong>Physical activity is an effective evidence-based intervention with extensive physical and psychosocial benefits for individuals living with and beyond cancer. Despite being the largest visible minority group in Canada, uptake of currently available exercise interventions, such as the Canada-wide Exercise for Cancer to Enhance Living Well (EXCEL) study, is low among individuals of South Asian heritage living with and beyond cancer. Culturally tailored programming may help to address barriers to participation.</p><p><strong>Methods: </strong>Using a community-based participatory research (CBPR) approach, we worked with a Punjabi Advisory Board to identify culturally specific gaps and adaptation needs for the EXCEL intervention. CBPR activities included: capacity bridging, identifying community needs and priorities, co-designing and tailoring the intervention, ethics submission, and collaboration on research outputs.</p><p><strong>Results: </strong>These collaborative efforts resulted in the development of the EXCEL-Punjabi, a culturally tailored exercise oncology intervention. Specific changes made to the EXCEL study included language of delivery, family involvement, educational handouts rather than webinars, culturally specific recruitment strategies, and one-on-one support for completing questionnaires.</p><p><strong>Conclusion: </strong>Ongoing collaboration with the Punjabi Advisory Board will allow for quality improvement of the intervention. The work outlined herein provides transparency of the CBPR process followed for the cultural tailoring of pre-existing exercise oncology programming. Future work will evaluate the feasibility and effectiveness of the EXCEL-Punjabi intervention. Overall, building a culturally tailored intervention with community input allows for more underserved individuals to experience the physical and psychosocial benefits of exercise oncology programming. This work represents a step towards more equitable supportive cancer care.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13617813/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149076087","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Practical learnings from a research engagement process involving youth with lived experience of suicidality.","authors":"Katherine G Hastings, Jodh Ghuman, Jeanna Pillainayagam, Irha Kashifa Asim, Ayah Has, Bridget Young, Emily Jenkins, Amir Ashtari, Skye Barbic","doi":"10.1186/s40900-026-00984-4","DOIUrl":"10.1186/s40900-026-00984-4","url":null,"abstract":"<p><p>Suicide remains a leading cause of death among youth in Canada, yet youth with lived experience are rarely involved in shaping suicide research activities, data interpretation, or reporting. This commentary, co-authored with youth advisors from an integrated youth services initiative in British Columbia, presents a case example of youth engagement in suicide-related research. Drawing on participatory and relational approaches, we reflect on how youth engagement informed the interpretation of administrative data, encouraged more thoughtful approaches to suicide reporting, and highlighted practical considerations for relational and ethical engagement. We emphasize that ethical research on suicide must move beyond risk avoidance towards more transparent and youth-centred partnerships to enhance health services and policy recommendations for suicide prevention.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13602607/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149041045","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Conceptualising and operationalising 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI) in youth mental health research: a scoping review.","authors":"Josimar Antônio de Alcântara Mendes, Mathijs Lucassen, Alex Adams, Ayan Mahamud, Lucy Hitcham, Sachiyo Ito-Jaeger, Christine Aicardi, Emma Nielsen, Lily Roberts, Ellen Townsend, Marina Jirotka","doi":"10.1186/s40900-026-00969-3","DOIUrl":"10.1186/s40900-026-00969-3","url":null,"abstract":"<p><strong>Background: </strong>Meaningful youth involvement has gained attention in mental health research, especially in collaborative approaches such as Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI). While both aim to support inclusive research, there is limited clarity on how they are conceptualised and used in projects together with young people. This scoping review examines how PPI and RRI approaches are defined and implemented in mental health research involving young people as collaborators rather than solely as research participants.</p><p><strong>Methods: </strong>The included studies were empirical, peer-reviewed articles published in English that involved young people (aged 10-25 years) as collaborators in shaping mental health-related research, interventions, or products beyond their contributions as study participants, and used PPI, RRI, or related collaborative approaches. Reference to terms such as \"participatory research\" alone was not treated as evidence of involvement; eligibility required young people to have a reported collaborative role. Eight bibliographic databases (Scopus, Web of Science, MEDLINE, PsycINFO, CINAHL, ASSIA, PsycARTICLES, and IBSS) were searched on 21 February 2024. Following the JBI methodology and PRISMA-ScR guidelines, records were screened. Data were then charted from the included papers to capture study characteristics, definitions and applications of PPI and RRI, and the modes and reported forms or roles of youth involvement.</p><p><strong>Results: </strong>Thirty-two papers were included, most were published from 2022 onwards, originated from high-income English-speaking countries, and defined and applied PPI more frequently than RRI. However, both approaches lacked operational clarity. Key terms such as co-production, co-design, and participatory research were widely but inconsistently used, often without clear definitions or sufficient information to establish whether young people were involved as partners rather than solely as research participants. Explicit discussions related to power or intersectional barriers to youth involvement were rare. Some studies reported involving large numbers of young people, including up to 339 youths, raising questions about feasibility and depth of involvement.</p><p><strong>Conclusions: </strong>This review highlights promising trends in extending youth involvement in mental health research, but also reveals important conceptual and ethical limitations. The findings emphasise the need for clearer definitions, explicit distinctions between meaningful youth involvement and being researched as a study's participant, more inclusive research practices, and stronger commitments to equity. Expanding future research is crucial for advancing responsible and collaborative approaches in youth mental health.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13602541/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149041057","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How, why, for whom, and in what contexts organisational and team dynamics shape, and are shaped by, service user researchers in higher education mental health research centres: a realist review protocol.","authors":"Alejandro Argüelles Bullón, Fiona Lobban, Andrew Harding","doi":"10.1186/s40900-026-00980-8","DOIUrl":"10.1186/s40900-026-00980-8","url":null,"abstract":"<p><strong>Background: </strong>Service user researchers (SURs) are increasingly recognised as integral contributors within academic mental health research centres. However, the ways in which these roles are integrated and supported vary widely across academic contexts and are strongly shaped by organisational structures, team cultures and role clarity. While some SURs can contribute meaningfully and thrive, others experience challenges such as emotional labour and limited structural support. There remains a lack of theory-driven understanding of how organisational and team dynamics shape, and are shaped by, the SUR experiences and contributions. This protocol outlines the methods and approach for an ongoing realist review exploring how, why, for whom, and in what contexts organisational and team dynamics within academic contexts shape, and are shaped by, the experiences and contributions of SURs.</p><p><strong>Methods: </strong>Realist approaches aim to identify the underlying mechanisms that produce outcomes for different groups in different contexts. This approach is well suited to examining the complex and context-sensitive dynamics of SURs roles within academic mental health research teams. This realist review is organised into five phases. The first phase, now completed, involved defining the scope of the review and developing initial programme theories through consultation with key stakeholders. Subsequent phases will include systematic searching of academic and grey literature, quality appraisal, data extraction, realist analysis and synthesis, conducted iteratively with ongoing stakeholder engagement.</p><p><strong>Discussion: </strong>By making explicit the mechanisms and contextual conditions underpinning SUR roles and organisational and team dynamics, this realist review aims to generate evidence-based recommendations to strengthen organisational and team dynamics in academic contexts. Identifying how specific organisational practices and cultural norms shape and are shaped by SUR experiences and contributions will inform how these roles can be more effectively designed and embedded across diverse academic contexts. Findings from this review will inform a subsequent phase of realist interviews with key informants, supporting further iterative theory refinement.</p><p><strong>Systematic review registration: </strong>PROSPERO CRD420261296394.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13599209/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149031647","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}