Research Involvement and Engagement最新文献

{"title":"Views on mental health research in the context of schizophrenia: perspectives of peer support workers and researchers with lived experience - a qualitative study.","authors":"Paul Nickel, Moritz Wigand","doi":"10.1186/s40900-026-00975-5","DOIUrl":"10.1186/s40900-026-00975-5","url":null,"abstract":"<p><strong>Background: </strong>Since the end of the 20th century, mental health research has been increasingly driven by the hope of uncovering the neurobiological roots of mental illness. Despite progress in this area, significant therapeutic breakthroughs - especially for complex conditions such as schizophrenia - remain limited. It is unclear whether these research priorities truly align with the needs and experiences of those affected. Greater involvement of people with lived experience in shaping research questions and processes could enhance the clinical relevance of research and lead to more effective, patient-centered interventions.</p><p><strong>Methods: </strong>This qualitative study explores the perspectives of peer support workers and researchers with lived experience in mental health research on the context of schizophrenia. We conducted semistructured interviews with 12 peer support workers and one researcher with lived experience. To contextualise and illustrate the findings, selected perspectives from 13 additional interviews with patients with schizophrenia are included. Interviews were analysed using qualitative content analysis according to Kuckartz.</p><p><strong>Results: </strong>Three central categories were identified: (1) Perception of mental health research: Participants valued both neurobiological and social approaches to research equally. They acknowledged certain advances; however, these developments were viewed as gradual and still inadequate. (2) Participation in research: Participants strongly demanded greater involvement of people with lived experience in all research stages. (3) Manner of research: Participants expressed a strong desire for user-set priorities, dissatisfaction with current research topics, perceived marginalisation, structural issues such as publication bias (e.g. favouring large randomised controlled trials over qualitative studies) and a lack of funding.</p><p><strong>Conclusions: </strong>Overall, the findings highlight the importance of incorporating lived experience in all stages of mental health research. More inclusive approaches are viewed as essential for improving research and care.</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/PMC13599242/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149031585","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":"Involving a black woman patient and public involvement group in maternal health methodology research: learning from the PROMISE Study.","authors":"Sophie S Hall, Georgia Clancy, Shireen Patel, Bhuvan Majmudar, Fatou Benga, Makini Jones, Catherine Henshall","doi":"10.1186/s40900-026-00983-5","DOIUrl":"10.1186/s40900-026-00983-5","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) is at the centre of high-quality health research, but PPI representatives are often limited in terms of demographic diversity and are often absent from methodology research. In maternity research, this exclusion is consequential, as Black women experience significant healthcare inequities, are often excluded from research, and yet are rarely involved in shaping how research is designed and conducted.</p><p><strong>Aim: </strong>To critically reflect with our PPI members on the development, processes, and impacts of PPI in the methodology study - PROMISE, which aimed to support Research Delivery Teams to engage Black women in discussions about opportunities to participate in maternal health research.</p><p><strong>Methods: </strong>PROMISE embedded PPI across the research lifecycle, including grant development, recruitment strategy design, data interpretation, and the co-design of outputs. A purposively recruited national PPI group of Black women with lived experience of pregnancy worked in partnership with researchers and a community engagement organisation. Together with PPI representatives, we drew upon the GRIPP2 long-form framework to articulate learning around conducting meaningful, inclusive PPI in maternal health and methodology research with Black women.</p><p><strong>Results: </strong>PPI shaped the study focus, challenged early assumptions about engagement, strengthened interpretation of qualitative findings, and helped co-design the main outputs of the PROMISE study, which included Principles of Engagement for supporting research delivery teams to engage Black women in maternity research. Through this reflective piece we co-developed lessons for conducting inclusive PPI with Black women, highlighting the importance of trust-building, cultural specificity, flexibility, emotional safety, and a recognition of the importance of interpreting findings through lived experience.</p><p><strong>Conclusions: </strong>Conceptually, the study positions inclusive PPI with Black women as a methodological necessity that reshapes research design, interpretation, and implementation. Alongside our reflections supported by the GRIPP2 framework, we describe practical approaches to implementing inclusive PPI processes in methodology research.</p><p><strong>Trial registration: </strong>Not applicable.</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/PMC13599247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149031632","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":"Facilitators and barriers to patient and public involvement in developing learning health systems within community health services: ascoping review.","authors":"Isis Kelly Dos Santos, Krisztina Vasarhelyi, Karen Lok Yi Wong, Annette Berndt, Tracy Windsor, Katrina Yuen, Yong Zhao, Jeffrey Wong, Sue Macdonald, Andreas Pilarinos, Lillian Hung","doi":"10.1186/s40900-026-00978-2","DOIUrl":"10.1186/s40900-026-00978-2","url":null,"abstract":"<p><strong>Background and aims: </strong>Learning Health Systems (LHS) integrate research, clinical expertise, and patient data to continuously improve health care. Although community engagement is central to LHS, existing literature has largely focused on data infrastructure, clinical improvement, and system learning, with limited attention to meaningful patient and public involvement (PPI) in community-based care. This review aimed to identify facilitators and barriers to such involvement in the development of LHS in community health services.</p><p><strong>Methods: </strong>We conducted a scoping review in line with the JBI methodology and searched MEDLINE (Ovid), CINAHL, Embase, PsycINFO, Scopus, Web of Science, and Google Scholar. Reference lists were searched using forward and backward citation. The date of the last search was August 10, 2026. We excluded studies conducted in acute or hospital settings and conference proceedings. Two reviewers independently screened and extracted data using Covidence, and NVivo was used to synthesize the outcomes.</p><p><strong>Results: </strong>We identified 12 studies published between 2017 and 2025, most conducted in the United States (75%). Studies included diverse populations such as older adults, individuals with chronic disease survivors, LGBTQ+ individuals in cancer survivorship care, and stroke survivors. Patient and public involvement ranged from consultation and interviews to partnership and co-design, while shared governance or co-led models were uncommon. Barriers to meaningful involvement included mistrust in healthcare systems, structural inequities, fragmented care pathways, poor communication, limited infrastructure, lack of sustainable engagement support, and power imbalances that contributed to tokenistic participation. Facilitators included trust-building, mutual respect, community partnerships, culturally responsive engagement, co-design approaches, and supportive organizational leadership. Strategies to enhance engagement included care coordination tools, telehealth, inclusive recruitment practices, bidirectional feedback systems, knowledge translation initiatives, and patient and family participation in decision-making and service design.</p><p><strong>Conclusion: </strong>This review highlights that meaningful patient and public involvement in Learning Health Systems depends not only on technical infrastructure, but also on relational, organizational, and structural conditions that support equitable participation. Findings suggest that community-based LHS development requires sustained investment in trust-building, shared decision-making, inclusive governance, and long-term engagement strategies. Future research should examine how participatory approaches influence equity, governance, service improvement, and long-term Learning Health System outcomes.</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/PMC13599110/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149031565","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":"Women's involvement and engagement in climate and health research in two Global South countries - Indonesia and Malaysia: barriers and facilitators.","authors":"Raksha Pandya-Wood, Gabriela Fernando, Savyna Selvarajan, Dessy Rosalina, Azliyana Azhari, Nadira Chairani, Grace Wangge","doi":"10.1186/s40900-026-00953-x","DOIUrl":"10.1186/s40900-026-00953-x","url":null,"abstract":"<p><p>Climate change disproportionately affects women in low- and middle-income countries (LMICs), where entrenched gender roles shape vulnerability and response capacities. Many women are often responsible for post-disaster clean-up, caregiving for children and relatives affected by climate-related health impacts, and ensuring household food and water security during periods of scarcity. These roles place many women at the frontline of climate-related hardship, yet their perspectives remain underrepresented in climate and health research. Addressing this gap is critical for generating evidence that is both equitable and grounded in the realities of those most affected. This study sought to explore conditions under which a snapshot of women in Southeast Asia could move beyond participation toward partnership in future research and to examine pathways for their active involvement in research, not merely as participants but as partners in shaping agendas, methodologies, and outcomes. We conducted workshops in Indonesia and Malaysia to examine women's potential roles across the research cycle, their training needs, and the barriers and enablers to involvement and engagement in research. Discussions revealed that they are willing and able to contribute at all stages of research, provided safe, supportive spaces are created. These spaces were described as women-only environments that allowed children to be present, enabling participation without compromising caregiving responsibilities. However, a critical barrier was the requirement for men's permission to engage in research activities, highlighting the need to negotiate access and build trust within households and communities. Religious and cultural contexts further shape these dynamics, underscoring the need for researchers and policymakers to collaborate with local institutions to strengthen community ties and facilitate women's inclusion. Our findings indicate a snapshot of what facilitates women's involvement as active partners in climate and health research, thereby enhancing the relevance, legitimacy, and sustainability of such research. By addressing structural barriers and embedding culturally sensitive approaches, participatory research can empower women, amplify community resilience, and generate adaptation strategies that benefit entire families and communities. The implications extend beyond Southeast Asia, offering lessons for global climate-health research on how inclusive methodologies can contribute to more equitable and sustainable responses to climate change.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13595536/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149018133","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":"Your voice matters: using participatory film to engage people with chronic pain in public involvement and research.","authors":"Sarah A Harrisson, Samina Begum, Claire Toussaint, Mark Agathangelou, James Rattee, Melanie A Holden, Krysia Canvin","doi":"10.1186/s40900-026-00977-3","DOIUrl":"10.1186/s40900-026-00977-3","url":null,"abstract":"<p><strong>Background: </strong>People living with chronic pain (≥ 3-months) often struggle to participate in valued activity (for example, family life, work and in their community) and are under-represented in public involvement and research. We aimed to broaden awareness and encourage engagement in public involvement and research among people living with chronic pain. We outline how we co-produced a film to capture experiences of chronic pain and the potential benefits of engaging in public involvement and research.</p><p><strong>Methods: </strong>We undertook a participatory filmmaking project guided by UK Standards for Public Involvement. A co-production team of public contributors (n = 4), all with lived experience of chronic pain and experience in community outreach; a filmmaker; and a physiotherapist-researcher worked together across 5 phases, pre-funding, design and production planning, story capture and filming, editing and dissemination in a series of online meetings. The public contributors recruited additional contributors with lived experiences of chronic pain (n = 7), including individuals with no prior research involvement and 2 non-English speakers. Reflective discussions were embedded throughout, and impact was documented using the Public Involvement in Research Impact Toolkit (PIRIT).</p><p><strong>Findings: </strong>Co-production shaped all stages of the project. Public contributors within the co-production team were highly involved, using lived experience to shape priorities, and key creative, strategic and practical decisions including outreach, story capture, translation and sharing the final film. Their lived experiences formed the core content of the film. Flexible and person-centred approaches enabled contributors to exercise choice over how their experiences were captured, represented and shared. Our approach supported inclusive, accessible involvement; ensured authentic and culturally sensitive representation. It also demonstrated benefits for contributors. First‑person reflections from the co-production team illustrate how individuals experienced the project, including increased confidence, connection, and validation.</p><p><strong>Conclusions: </strong>These insights illustrate how participatory filmmaking can move involvement beyond consultation toward shared power and meaningful partnership. The co‑produced film which is publicly available, Your Voice Matters: Living with Chronic Pain, Shaping the Future of Research, was a tangible output of this process and a resource to help people make sense of chronic pain and research involvement, and to encourage future engagement.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13589369/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149002747","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":"Centring the voices of birth mothers who faced infant removal through the co-production of the MUMS@RISC artwork: an arts-based evaluation of trauma-informed research collaboration and participation.","authors":"Kaat De Backer, Tonka Uzu, Brooklynn Reid, Erica Hayhoe, Angela Frazer-Wicks, Cassandra Lawrence, Pauline Bentley, Elsa Montgomery, Jane Sandall, Abigail Easter","doi":"10.1186/s40900-026-00966-6","DOIUrl":"10.1186/s40900-026-00966-6","url":null,"abstract":"<p><strong>Background: </strong>In the UK, newborn babies are a growing group of children entering the care system due to safeguarding concerns. Their mothers often experienced a life course of adversity and trauma, resulting in fractured trust in public services and health and social care professionals. Moreover, pregnant and postnatal women with involvement from child protection agencies are known to have increased risk of perinatal morbidity and mortality. To address the existing evidence gaps around perinatal healthcare and outcomes for this group of women, the MUMS@RISC study was designed, with cyclical involvement of an advisory group with women with lived experience.</p><p><strong>Methods: </strong>We adopted a trauma-informed approach to public and patient involvement and engagement, which was reflected in our study values, the study design, as well as in our dissemination strategy.</p><p><strong>Results: </strong>As part of the dissemination, a summary report with key research findings was co-produced, accompanied by artwork that was co-created by the advisory panel, the lead researcher and an artist. The step-by-step process of co-creation of the MUMS@RISC artwork allowed for gradual incorporation of feedback of the advisory panel, resulting in intricate layers of details and meaning in each of the illustrations.</p><p><strong>Conclusions: </strong>Our approach to trauma-informed research collaboration and participation demonstrates that involving people with traumatic lived experience in a robust, sensitive way can be done and strengthens the credibility, contextual accuracy and interpretative validity of research findings. Our evaluation of co-producing artwork as part of our dissemination strategy highlights the potentially healing and empowering nature of genuine and sensitive co-production, providing a rare opportunity to centre the voices of a marginalised group of mothers and reflect their stories within the wider research findings through art.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13584445/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148991667","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":"Management of choking in Motor Neuron Disease: patient and public involvement in a co-produced mixed-methods study protocol.","authors":"Dorinda Moffatt, Lisa Hinton, Lucinda Spurway, Angela Martin, Neil Drinkwater, Donna Noonan, Claire Rose, Sara Mazzucco","doi":"10.1186/s40900-026-00974-6","DOIUrl":"10.1186/s40900-026-00974-6","url":null,"abstract":"<p><strong>Background: </strong>Up to 70% of people living with Motor Neuron Disease (plwMND) report distressing episodes of choking (a feeling of suffocation or airways blockage) due to involvement of bulbar muscles. There is an evidence gap on management of choking in plwMND, which is mirrored by the absence of guidance and training for healthcare professionals. Choking in plwMND is associated with other signs of bulbar involvement, such as communication difficulties due to dysarthria, which can be a barrier to effective participation in research. In this study protocol, we describe an innovative approach to meaningful involvement of plwMND, to co-produce a research project on management of choking tailored to their needs and aligning with their priorities.</p><p><strong>Methods: </strong>Phase 1 (Patient and public involvement co-design meeting): We first engaged in a meeting with plwMND, carers and healthcare professionals, to identify their priorities in relation to improving management of choking in MND. To ensure inclusive participation, we used the Theory of Change framework; people with communication difficulties were supported by a Speech and Language Therapist through their chosen augmentative and alternative communication aids. A key priority identified was the need to produce evidence-based guidance for management of choking tailored to the needs of plwMND. Phase 2 (Healthcare research study protocol on management of choking): based on the outcome of Phase 1, a multidisciplinary team (including individuals with lived experience) designed a mixed-methods, multi-centre research project based on four work packages (WPs). WP1: systematic review of the existing scientific literature on management of choking; WP2: interviews and focus groups with people with lived experience of choking in MND; WP3: co-design of a clinical algorithm detailing interventions to manage choking, based on WP1 and 2; WP4: algorithm development and dissemination with continuous involvement and input from people with lived experience through a Patient and Public Involvement co-applicant and patients' representatives.</p><p><strong>Discussion: </strong>In plwMND and choking, barriers to inclusion in PPI and research range from reduced accessibility due to physical disabilities, to discriminatory sampling due to communication issues. Through inclusive engagement at the outset, plwMND highlighted a mismatch between their priorities (gaining knowledge about choking and feeling empowered to manage it at home) and available evidence (lack of guidance and training for healthcare professionals). This research project aligns with what matters to most affected patients, their carers and healthcare professionals, aiming to fill an evidence gap through new guidance to manage choking tailored to their needs.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13584399/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148991733","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":"Put purpose before process: lessons from evaluating patient involvement in governance structures in health research organisations.","authors":"Kristina Staley","doi":"10.1186/s40900-026-00942-0","DOIUrl":"10.1186/s40900-026-00942-0","url":null,"abstract":"<p><p>Many health research organisations make strong commitments to involvement in their organisational strategies. This commitment is often operationalised via an involvement strategy, and evidenced by high quality, successful involvement within areas such as making research funding decisions, or policy development. One area that can prove more challenging is involvement in governance structures. Little has been written about impact or best practice in this context. This article reflects the wealth of knowledge and experience from Board members, staff and involved patients that has been shared during evaluations of involvement. Regretfully these people cannot be named as these evaluation reports have not been made public. The intention is to draw out general lessons to support wider discussion in this area, and share valuable insights from some of the more challenging experiences. With little guidance available, it is unsurprising that organisations tend to approach involvement in governance in the same way as other forms of involvement, leading to a focus on process - how to recruit, prepare and support patients to join a Board. The learning suggests that having a clear and shared understanding of the purpose of involvement at this strategic level may also be critical to its success. It seems that there are many different understandings of what this involvement is for and these are not often clearly defined. Involvement is also commonly confused with stakeholder engagement. Stakeholder engagement requires people to speak on behalf of others and to be representative of a wider community. In contrast, during involvement, patients contribute their experiential knowledge to decision-making as an expert in their own right. When making any kind of strategic decision people will refer to their values to inform their views. Involved patients are likely to hold different values to people who are an integral part of the health research system. This can lead to value conflicts which are best resolved by allowing considerable time for discussion and through skilled support from facilitators. Being prepared for these kinds of conflict to arise and having strategies and resources to deal with them, may be another important requirement for meaningful and impactful involvement in governance.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13576090/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148978098","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":"A case study of patient and public involvement in sepsis genomics research.","authors":"Angeline Lee, Hanyu Qin, Kiki Cano-Gamez, Julian C Knight","doi":"10.1186/s40900-026-00962-w","DOIUrl":"10.1186/s40900-026-00962-w","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) in research has been shown to be integral to good research practices, ensuring research is relevant to the population it serves and appropriately conducted. However, there are few examples in the literature of patient and public involvement in discovery translational research using patient samples from non-interventional studies. The aim of this case study is to report our group's experience incorporating PPI into such work involving sepsis genomics research over a year, challenges we faced, and how we overcame them.</p><p><strong>Methods: </strong>We first reviewed the literature for successful PPI practices, asked for advice from other experienced groups at our institution, engaged interested groups and individuals, decided on the key aims of the PPI group, and developed materials to summarise our research and the knowledge gaps within sepsis. We recruited fourteen partners with lived experience of sepsis through a variety of sources to join our PPI panel and built a relationship with them by having regular meetings, and nominating a link researcher in the group who would be their port of call for any questions or updates. The partners met with the researchers online using a commercial virtual communication platform, and were sent surveys at different points during the process to assess partner satisfaction with the process. We followed the plan-do-study-act method for quality improvement.</p><p><strong>Results: </strong>The PPI partners helped shape the direction of research investigation for the group. They joined research grant applications, supported preparation of plain language summaries and research participant information leaflets to be given to patients and families. They helped researchers improve the conduct of the clinical aspect of studies that involved collecting patient samples in the long term. The Patient and Public partners reported high levels of satisfaction joining the programme and received some educational information about the research process and sepsis research, as well as remuneration for their time.</p><p><strong>Conclusions: </strong>Patient and public involvement in discovery translational research is feasible and can be very useful and rewarding for both the researchers and patient and public partners involved. A coordinated strategy including engagement of interested groups and individuals, clear directions for the PPI group, and a named link researcher was essential for success.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13579966/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148978036","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":"Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?","authors":"Kristina Staley, Lynn Laidlaw","doi":"10.1186/s40900-026-00944-y","DOIUrl":"10.1186/s40900-026-00944-y","url":null,"abstract":"<p><p>The involvement of people with lived experience makes research relevant and useful to the people it intends to help. How we conceptualise involvement influences every aspect of our approach to it. Over many years, the authors have sometimes witnessed or directly experienced problems caused by conceptualising involvement as being the same as (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) \"lay\" engagement. We see these as distinct activities with different purposes to involvement. While representation (standing in for someone else) is important in these activities, we argue it is not required of people involved in research. We conceptualise involvement as a form of mutual learning. In particular, researchers learn from people's experiential knowledge, which is knowledge based on the individual's unique experience, but nonetheless similar to others. This knowledge becomes expertise because it enables people with lived experience to solve problems researchers have with their research. We therefore conclude that the success and quality of involvement depends on involving people with expertise that is relevant to the context. Our concern is that the authority and legitimacy of the contributions of people with lived experience is sometimes misunderstood to be dependent on their representativeness, rather than their expert knowledge. We have seen and experienced that this can lead to negative impacts on the research, and on the individuals involved, especially in terms of the emotional labour required to challenge researchers' conceptualisations of involvement. We also note that practices to support diversity and inclusion can sometimes be confused with ensuring that an involved group is approaching statistical representation of a population. While we see these as different objectives, we believe all research-related activities need to be inclusive of diverse people. Overall we conclude that a greater understanding of the value of expertise based on experiential knowledge, would help take the onus off individuals to be representative, and give them the authority and legitimacy to speak on their own behalf. The responsibility for successful involvement then shifts to the wider research system to ensure that researchers are seeking, and adequately supporting the involvement of diverse people with relevant expertise.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":4.1,"publicationDate":"2026-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13570545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148956765","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}