Research Involvement and Engagement最新文献

{"title":"What we know, don't know, and need to know about patient authorship: a scoping review, evidence gap analysis, and research roadmap.","authors":"Karen L Woolley","doi":"10.1186/s40900-026-00971-9","DOIUrl":"https://doi.org/10.1186/s40900-026-00971-9","url":null,"abstract":"<p><strong>Background: </strong>Patient authorship is an innovation, challenging a centuries-old medical publishing model. To guide best practices for patient authorship, a strong evidence base is required. The objectives of this research were to: (1) Identify 'what we know' about patient authorship via a scoping review. (2) Describe 'what we don't know' about patient authorship via an evidence gap analysis. (3) Propose 'what we need to know' about patient authorship via a research roadmap.</p><p><strong>Methods: </strong>This patient-led, voluntary, research project was conducted according to best practice guidelines. Using a registered protocol, the Population, Concept, and Context framework was applied and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - Scoping Reviews checklist completed. The literature search strategy, prepared with a university information specialist, focused on peer-reviewed publications reporting empirical evidence on patient authorship. Database searches (MEDLINE, EMBASE; all dates up to 03/04/2025) were complemented by hand-searching and expert recommendations. References were downloaded into EndNote 21, screened using Covidence, and data (40 variables) extracted. Published evidence gaps were coded using eight deductive topic-summary themes and categorised (ethical/effective practices; lifecycle stage -planning, generating, sharing, evaluating). Frequency analysis of evidence gaps was used to generate proposed research questions.</p><p><strong>Results: </strong>Of 1,036 retrieved publications, 29 were eligible, yielding 1,160 datapoints. Most publications on patient authorship are recent (86% published between 2020-2025), accessible (90% open access), include patient authors (83%), but are limited in terms of reporting (34% used GRIPP2) and representativeness (97% from high-income countries; 79% from English-language countries). Published evidence on patient authorship exists to support ethical and effective practices for each publication lifecycle stage. However, 90 evidence gaps were identified. The resulting research roadmap includes research questions to address high-frequency gaps.</p><p><strong>Conclusions: </strong>This study provides the first structured and integrated synthesis of peer-reviewed, published, empirical evidence on what is known, not known, and what we need to know about patient authorship. Citable and structured evidence is now readily available to help support patient authorship practices and resources. The novel roadmap could help reduce research waste and accelerate evidence-based best practice guidelines for patient authorship. An infographic plain language summary is available (Additional File 1).</p><p><strong>(trial) registration: </strong>Not applicable. An a priori protocol for this research was registered and is available at https://doi.org/10.17605/OSF.IO/BGK24.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Preparing the next generation of health researchers by embedding public and patient engagement into Canadian graduate education: reflections from graduate students.","authors":"Ingrid Nielssen, Halle Deakin, Rachel Kidd, Minnella Antonio, Ibadat Warring, Adebola Adetiba, Janine Elenko, Eliane Domingue, Inara Lalani, Melissa Eastveld, Paul Fairie, Maria J Santana","doi":"10.1186/s40900-026-00989-z","DOIUrl":"10.1186/s40900-026-00989-z","url":null,"abstract":"<p><p>Public and Patient Engagement (PPE) in health research has become an established practice and is increasingly now an imperative for publicly funded health research grants. Graduate students represent the next generation of health researchers; therefore, it is essential they gain PPE knowledge and skills within academic landscapes that promote collaborative research with those whom research is intended to benefit. By securing theoretical knowledge and practical experience early in their research careers, effective PPE can become well-established in all academic, health research and healthcare domains. However, many academic institutions struggle with implementing the necessary systemic and cultural change to moving the science and practice of PPE forward within their institutions. Nine students enrolled in a graduate level PPE course at the University of Calgary, Alberta, Canada engaged in an end-of-term reflexive class exercise that centred on the question \"What would make patient engagement more possible for graduate students during their graduate degrees?\" As a result of iterative review and discussion of the responses, four key themes were identified: (i) embed PPE elements into health research graduate program structure, (ii) offer opportunities to support hands-on learning and practice of PPE, (iii) integrate public, patient, and community members into graduate program design and delivery, and (iv) emphasize ethical community-based research considerations and researcher reflexivity. For health science graduate students to inclusively integrate PPE theory and principles into their research work, it is important that the academic institutions they are enrolled in keep pace with current research imperatives, and ethical and funding practices. This means regularly assessing and evaluating ways their institutional systems, processes, and programs are responding and evolving. In this reflective commentary we offer our considerations, and suggested guidance on best practices to continue to 'move the needle' on embedding PPE culture and practice in academic institutions in Canada and globally. We hope to initiate response and further discourse from other graduate students and from patient partners who have shared their lived experience insights to graduate student research studies, and mentorship and governance roles in health science graduate level curriculum and program planning.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13675974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149207965","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":"Valuing student voices: a qualitative study on fair recognition and compensation practices for student partners in mental health research.","authors":"Sapolnach Prompiengchai, Lexi Ewing, Emma McCann, Phuc Tran, Kristin Cleverley","doi":"10.1186/s40900-026-00993-3","DOIUrl":"10.1186/s40900-026-00993-3","url":null,"abstract":"<p><strong>Background: </strong>Post-secondary student mental health research increasingly calls for students to be engaged as equal partners, yet there is a lack of guidance on how to recognize and compensate their contributions. This study examines how student partners' contributions to post-secondary student mental health research should be recognized through qualitative insights from diverse interest groups.</p><p><strong>Methods: </strong>We conducted qualitative, semi-structured interviews with 13 participants representing diverse interest groups: faculty researchers, student researchers, students with lived experience, and staff in post-secondary institutions. The data was analyzed using conventional content analysis.</p><p><strong>Results: </strong>Five themes were identified: (1) lived experience as valued expertise; (2) principles of fair and equitable recognition; (3) current compensation practices; (4) systemic barriers to monetary compensation; and (5) structural solutions and advocacy. Together, themes suggest that lived experience was seen as integral to research design, implementation, and knowledge mobilization. Participants emphasized proportionality, transparency, shared decision-making, and non-coercion as guiding principles. Compensating student partners is not the norm, in part, because there are barriers such as institutional polices and limited funding that are at odds with how we should compensate students. Structural solutions and advocacy to normalize compensation include creating compensation guidelines, reporting compensation practices, and working with grant agencies.</p><p><strong>Conclusion: </strong>Overall, we identified compensation considerations for student partners. Based on our qualitative insights, we recommend underlying principles that should govern recognition practices in this unique research context and potential solutions to normalize the recognition of students' lived experiences.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13670727/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149184899","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":"Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings.","authors":"Eve Namisango, Lorna K Fraser, Kennedy Nkhoma, Julia Downing, Catherine Evans, Elizabeth Nabirye, Elizabeth Namukwaya, Emmanuel Luyirika, Elly T Katabira, Jane Nakaweesi, Yvonne Karamagi, Juliana Kayaga, Annet Nakirulu, Dianah Hossana, Moses Muwanga, Richard Harding","doi":"10.1186/s40900-026-00992-4","DOIUrl":"10.1186/s40900-026-00992-4","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Engaging children in research processes is recognised as best practice, as it ensures studies are relevant and responsive to their needs. Limited evidence exists on effective approaches for engaging children with serious illnesses, particularly in palliative care and in resource-limited settings. This study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;This qualitative, participatory study used three co-design workshops to develop engagement principles and practical processes for meaningfully involving children and young people in research. Twenty participants living with serious illnesses were purposively recruited from three heterogeneous tertiary care services in Uganda. Guided by the National Institute for Health and Care Research (NIHR) principles for public involvement, workshops were facilitated by members of a multidisciplinary team, parents and caregivers. Workshop discussions, activity outputs and facilitator notes were analysed using framework analysis, with the NIHR principles as the initial framework, and the emerging principles were refined and agreed through consensus with participants. The resulting engagement principles are being implemented and evaluated within the parent research programme through an ongoing Child Advisory Group, enabling refinement of the engagement approach through iterative feedback from children, young people and researchers. The workshops therefore represent the initial phase of a broader programme, with Child Advisory Group activities planned through 2027.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Nine principles for engaging and involving children and young people in palliative care research were co-designed. Examples include: Involve children early to ensure that objectives, questions and outputs are relevant to their needs and concerns; Creative and flexible co-design of workshop and meeting agendas makes sessions enjoyable, thus increasing attendance; Involvement of children in the design of research study materials ensures that they are child-centred and easily understood; Sharing decision-making power with children strengthens efficiency, coordination, communication, and group management. Early implementation through the Child Advisory Group indicated that the principles were feasible and acceptable to children, young people and researchers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Co-designed engagement principles can support meaningful involvement of children and young people throughout paediatric palliative care research. These findings provide practical guidance for establishing child-centred engagement approaches in resource-limited settings and may inform future research, policy and practice. Ongoing application of the principles by the Child Advisory Group through 2027 will all","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13660183/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149171649","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":"Patient engagement in protocol development for rare disease clinical trials: a framework.","authors":"Janella Beltran, Sarah Bolton, Pesh Patel, Rohita Sharma","doi":"10.1186/s40900-026-00985-3","DOIUrl":"10.1186/s40900-026-00985-3","url":null,"abstract":"<p><strong>Background: </strong>Meaningful patient engagement requires understanding lived disease and healthcare experiences. This patient-centric approach is especially valuable when applied to the design and execution of clinical trials, as participation barriers may hinder trial recruitment, retention, and detection of meaningful outcomes. Patient engagement is particularly important in the study of treatments for rare diseases, where populations are small and geographically dispersed and there are few sites with relevant clinical expertise. Additionally, protocol amendments to address hurdles are expensive and can cause delays in trial activities, which can affect downstream regulatory approvals and access to treatments. Alexion, AstraZeneca Rare Disease, worked with patients and their stakeholders to identify points of additional trial burden and enable patient-driven changes before clinical trial protocol finalization.</p><p><strong>Methods: </strong>Patients, parents of pediatric patients, and patient advocacy group representatives with diverse experiences participated in virtual, study-specific perspective exchange sessions on 4 protocols (adults with generalized myasthenia gravis, pediatric patients with generalized myasthenia gravis, adults with antibody-mediated rejection after kidney transplantation, and adults with transthyretin amyloid cardiomyopathy). Participants discussed their disease journey, the protocol, and perceived barriers to clinical trial awareness, enrollment, participation, and follow-up through semistructured interviews.</p><p><strong>Results: </strong>Participants raised points about the eligibility criteria, study drug self-administration, visit frequency, participant mental health, and the relevance of specific outcome measures. In response, the study sponsor proactively changed the clinical trial protocols when feasible. Changes included expanding the eligibility criteria, developing an instructional video on self-administration of the study drug, and reducing the frequency of clinic visits. In addition, the sponsor created appreciation cards and trained trial sites on a standardized approach to help participants understand the goals of specific outcome measures.</p><p><strong>Conclusions: </strong>These insights led to demonstrable, advocate-recommended changes in rare disease clinical trial protocols before study delivery, underscoring how early patient-partnered drug development can be meaningfully applied to research in rare diseases.</p><p><strong>Trial registration: </strong>NCT05556096, NCT06607627, NCT06744647, and NCT06183931.</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":"2026-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13651072/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149149316","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":"Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa.","authors":"Kennedy Nkhoma, Eve Namisango, Emmanuel Luyirika, Patience Asiimwe, Denis Olodi, Paul Ebusu, Jane Bates, Duncan Kwaitana, Dorothee Van Breevoort, Modai Mnenula, Dickson Dick Chifamba, Lovemore Mupaza, Edwina Beryl Opare-Lokko, Adwoa Bemah Boamah Mensah, Catherine Evans, Richard Harding","doi":"10.1186/s40900-026-00987-1","DOIUrl":"10.1186/s40900-026-00987-1","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement and engagement (PPIE) are pivotal to maximising the impact of research on clinical care. Despite growing recognition of its importance, there remains limited evidence on best practices for implementing meaningful and contextually appropriate PPIE particularly in sub-Saharan Africa.</p><p><strong>Aim: </strong>This study aimed to explore patients and caregivers perspectives on meaningful engagement and involvement in palliative care research in Africa and identify contextually appropriate recommendations for establishing, supporting and sustaining PPIE structures and networks.</p><p><strong>Methods: </strong>This multi-national, qualitative cross-sectional study was conducted across four sub-Saharan African countries. We conducted qualitative studies across four African countries. In Ghana, Malawi, and Zimbabwe, in-depth interviews were conducted with older adults receiving primary or palliative care for chronic conditions. In Uganda, two focus group discussions (FGDs) were conducted with adult cancer patients. Topic guides explored: (1) the perceived added value of PPIE in research; (2) how patients and caregivers wished to engage in research; (3) potential roles within the research process; (4) preferred structures for PPIE activities; (5) capacity-building and training needs; and (6) support and resources required for effective participation. All interviews and FGDs were audio-recorded, transcribed verbatim, and analysed using framework analysis.</p><p><strong>Results: </strong>A total of 94 participants were recruited, comprising 57 patients and 37 caregivers (no caregivers were recruited in Uganda). Participants viewed PPIE as a platform for patient empowerment and meaningful engagement in research. Key areas in which participants wished to be involved included identifying research priorities, participating in ethical review processes, supporting patient identification and recruitment, contributing to data collection, engaging in research dissemination, and prioritising recommendations for patient care and health policy. Preferred PPIE formats included workshops and panel discussions, with quarterly meetings suggested. Training needs focused on capacity building, empowerment for PPIE roles, and preparing materials for dissemination.</p><p><strong>Conclusion: </strong>This study provides evidence-based recommendations for developing and sustaining meaningful PPIE in palliative care research in sub-Saharan Africa. Our findings contribute to the formalisation of PPIE in African palliative care research. Further work is needed to implement, refine and evaluate these approaches across different settings.</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":"2026-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13647782/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138636","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":"\"It gives me confidence and value\": evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on.","authors":"Kate Hough, Sarah Smith, Roger Byatt, Marcia Hudson, Tracey Newman","doi":"10.1186/s40900-026-00986-2","DOIUrl":"10.1186/s40900-026-00986-2","url":null,"abstract":"<p><strong>Background: </strong>All_Ears@UoS is a thriving patient and public involvement and engagement (PPIE) group that was established in March 2022. The ethos of All_Ears is to create an enduring partnership between researchers and people with lived experience of hearing loss to shape and inform research. This paper describes the findings from an evaluation to measure the perceived impact, value and engagement of the group. The UK Standards for Public Involvement were used as a framework. These include; Communications, Governance, Impact, Working together, Support and learning and Inclusive opportunities.</p><p><strong>Methods: </strong>Two surveys were co-designed with members of All_Ears and shared via an online platform to evaluate what was working well and what could be improved from the group members' and researchers' perspectives. Each survey combined demographic questions, rating scale questions to measure satisfaction and open-text questions to gather feedback. Descriptive statistics were used to describe the satisfaction and demographic data. Reflexive thematic analysis was used to analyse the free-text responses.</p><p><strong>Results: </strong>Strengths aligning to several of the UK Standards for Public Involvement were identified. Thematic analysis of group member responses developed six themes, encompassing the perceived value of the group for research, opportunities for learning and raising awareness, the benefits of the group, aspects that were working well or less well, and considerations around diversity and inclusivity. Four themes were developed from the analysis of researcher responses. Three themes reflected strong support for PPIE within research, while one focused on strengths and challenges in how the group was organised and run. Suggested areas for improvement were to enhance training opportunities to develop skills to support involvement and greater flexibility around meeting scheduling. Group members suggested that a faster reimbursement process is necessary while researchers highlighted a need for increased visibility of public involvement within the University.</p><p><strong>Conclusions: </strong>This evaluation has highlighted the perceived value, impact and benefits of embedding enduring PPIE on research and at an individual and societal level from the group members' and researchers' perspectives. We hope the findings enable biomedical and clinical researchers to see the value of building partnerships with patients and the public.</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":"2026-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13647862/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138607","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":"\"Co-production is catnip to my brain. I need it and I would be in care otherwise\": a call for action for researchers to safeguard the integrity of co-production in dementia research.","authors":"Laiba Ahmad, Martin Robertson, Ronald Amanze Ferguson, Eleanor Robinson-Carter","doi":"10.1186/s40900-026-00964-8","DOIUrl":"10.1186/s40900-026-00964-8","url":null,"abstract":"<p><strong>Background: </strong>In dementia research, co-production is a key mechanism for embedding the perspectives of those with lived experience into decision-making. However, despite its potential, its meaning and application remain inconsistent as co-production can often be limited to a single phase of a research study or tokenistic involvement. Co-authored by two people living with dementia and two researchers, this comment piece examines the evolution of co-production, its underpinning principles, and the challenges that threaten its integrity. Central to this work is a definition co-developed within the EMPOWER Dementia Network+, in collaboration with lived experts, researchers, and community partners. This definition foregrounds equity, shared power, and shared responsibility, and advocates for the sustained involvement of diverse stakeholders from project inception through to completion.</p><p><strong>Main text: </strong>Utilising co-production resources and models to highlight the key aspects of co-production, this call for action underscores the areas in co-production which need attention and reform by researchers. Through a narrative exploration of the co-production journey, from visioning and planning to delivery and outcomes, the paper identifies key elements that make co-production meaningful in both research and practice. These include embedding co-production throughout the research cycle, ensuring safe and equitable spaces, prioritising diversity and inclusion. Challenges include digital and geographical exclusion, language barriers, lack of training, and limited resources. The paper distinguishes between in-person, online, and hybrid delivery, highlighting how each setting influences engagement and outcomes. Real-world examples illustrate how these principles and barriers play out in practice, including direct quotes from the authors as experts by experience to capture their personal viewpoints.</p><p><strong>Conclusion: </strong>The comment piece offers a practical framework for embedding co-production meaningfully across research phases, supported by examples that demonstrate its transformative potential. It includes a set of recommendations to ensure power and responsibility are equally shared amongst participants. It positions our new, co-produced toolkit for lived experts, researchers, and practitioners to guide the planning, delivery, and evaluation of a research project. The toolkit has the potential to strengthen the integrity and use of co-production with people living with dementia, reduce tokenistic practices, and improve the relevance and impact of dementia research.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13647524/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138646","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":"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}