Abstract Background Homecare workers are an undervalued but essential part of the health and care workforce in England, providing vital end-of-life care without adequate training or support. Through the SUPPORTED study we explored the experiences, training and support needs of homecare workers who care for people with advanced illness, and co-developed (with homecare workers, managers, and educators) new training resources and recommendations to improve policy and practice. Main body This paper explores the public involvement in this study and the contribution made to the research process, research outputs, relationships between the people involved, and our understanding and practice of public involvement. We involved 23 people with personal experience of this topic in different roles. We worked with five public contributors (homecare workers and family carers) during the study inception and grant application stage. Following successful funding, we set up two advisory groups (homecare workers; service users and family carers) which met regularly to support and inform the study from protocol development onwards, including sense-checking interview findings and training resource development. We also included lay people with topic experience in research team management meetings and study oversight. The distinctive features of our approach included creating parallel streams of public involvement; giving voice to the workforce being studied; involving lay people in multiple roles and levels of study governance; integrating public involvement with qualitative research and co-design methods; sustaining a flexible, listening and adaptive approach; and using creative methods to understand and evaluate our work. Conclusion By using this approach, we successfully involved a workforce historically absent from research, with little influence on decision making in their working lives. Involving many people over a sustained period helped us learn from diverse perspectives and resulted in changes to our approach, for example, recruiting homecare workers directly instead of through managers, and better language to describe the study population. A dedicated coordinator role was critical in sustaining relationships and ensuring public voices were immersed into all aspects of the study. This had reciprocal benefits for public contributors, the research team, and the quality of the research, shaping our research and involvement practice and influencing the direction of the study.
Abstract Background Methodological research is often abstract, heavily theoretical and jargon laden. Despite having significant implications for the users of health and social care services, it can be difficult to involve the public and patients in research that is oriented towards more academic ‘ways of knowing’. This article combines Public and Patient Involvement and Engagement (PPIE) and university researcher perspectives on their experiences working on a study that aimed to develop a new evaluation approach. Methods Using a co-produced reflective case study design, four university researchers and three (representing a wider group of six) PPIE contributors reflected on their shared experiences of PPIE within the Realist Economic Evaluation Methods (REEM) methodological study. Reflections were gathered during a structured two-hour workshop, which identified three broad initial themes. These were explored in depth by academic/PPIE writing duos across two online follow-up meetings, producing collaborative written summaries. A fourth academic synthesised the summaries to ensure coherence and the final manuscript was examined and approved by the full team. Results The challenges encountered during the study were organised into three broad themes: (1) Identifying appropriate PPIE contributors; (2) maintaining and sustaining engagement; and (3) determining when and how best to engage. Conclusion We propose that PPIE in methodological health and social care research requires different considerations than PPIE in applied research, including actions to normalise uncertainty and be creative about modes of contribution as part of co-learning. We have articulated these as recommendations, with implications for funders/commissioners of research, university researchers and PPIE contributors alike.
Early- and mid-career researchers (EMCRs) in perinatal and parenting research are highly motivated, and increasingly expected, to involve people with lived experience meaningfully in their work. However, substantial structural constraints can reinforce tokenistic approaches. Without practical, context-sensitive guidance, meaningful involvement can feel simultaneously mandatory yet unattainable, ultimately undermining partnership efforts. We aim to support EMCRs navigating these complexities by articulating a set of practice-informed principles to guide meaningful, safety-centred lived experience involvement. To support EMCRs in implementing authentic lived experience involvement, several key elements are required: voluntary participation, explicit attention to safety and boundaries, person-first relationships, and deliberate efforts to flatten traditional hierarchies between researchers and parents. The VILLAGE (Valued Individuals Living and Learning About Growing Equity) is an Australian network of parents and carers intentionally designed to support life-friendly, opt-in engagement throughout the entire research life cycle. Led by lived experience experts to assist researchers in this integration, the VILLAGE provides a concrete illustration of how relational, strengths-based, and rights-based principles for meaningful lived experience involvement can be operationalised as the Valuing Our Insights through Collaborative Engagement (V.O.I.C.E.) Framework across three interconnected domains: (1) Relational and cultural foundations, which focuses on the social conditions that ensure involvement is safe and respectful; (2) Agency and voice, which foregrounds who decides and how individuals exercise choice; and (3) Structural integrity and reciprocity, which addresses the material and ethical conditions required for credible involvement. Finally, to sustain EMCR practice, academic institutions, funding bodies, and scientific journals must play a critical role in enabling the VOICE Framework. Moving from tokenistic lived experience involvement to true togetherness requires deliberate attention to power dynamics, safety, and institutional recognition, alongside a willingness to value relationships as a core component of research practice. A vital opportunity exists for EMCRs, institutions, publishers, and journals to collectively reshape how partnership is understood and structurally supported in health and social research. Early- and mid-career researchers in pregnancy, childbirth, and parenting want to include people with real, personal experience (lived experience) in their studies. They are often expected to do this, but they face major hurdles. These hurdles can make the inclusion feel like a “box-ticking” exercise rather than something genuine. Right now, there is a lack of practical advice on how to do this safely and meaningfully. We want to change this by creating a practical guide for researchers. By working alongside parents and caregivers from the VILLAGE network (an Australian network of parents and carers intentionally designed to support life-friendly, opt-in engagement throughout the entire research life cycle), we have created the Valuing Our Insights through Collaborative Engagement (V.O.I.C.E.) Framework which is a flexible set of guiding principles for meaningful lived experience involvement in research. These principles focus on respect, safety, human rights, and building on people’s strengths. Our guide is designed to be adaptable to real-world challenges and to other contexts, helping both researchers and everyday experts work together smoothly. Ultimately, our goal is to support meaningful, fair, and lasting partnerships that move far beyond tokenism.
People with intellectual disability have been under-engaged in the conduct of research. When engaged in research, community research partners with intellectual disability can enhance relevance, accessibility, translatability, and validity. While some tools exist to support community research partners with intellectual disability to engage in research, few comprehensively address the full lifecycle of a research study and are customizable to teams’ unique needs, contexts, and research questions. We collaborated with a Workgroup of 20 researchers with and without intellectual disability to develop the Equipped to Engage Toolkit. First, we cross walked existing engagement tools to stages of research (planning, doing, and sharing) and evaluated them for accessibility. Second, we developed new tools to fill gaps in accessible tools and comprehensive coverage of research tasks. Third, five pairs of researchers with and without intellectual disability evaluated the toolkit for utility, likelihood of future use, and accessibility. The Equipped to Engage Toolkit is an online set of 28 ready-to-use, customizable tools usable across planning (17 tools), doing (8 tools), and sharing (3 tools) stages of research. The tools include plain language, images, breaking tasks into small steps and facilitating community research partner input and study leaders’ responsivity to input. Participants perceived the toolkit to be usable and accessible and endorsed future use. Teams can select and customize tools from the Equipped to Engage Toolkit enhance engagement of community research partners with intellectual disability across the full life cycle of a research study. Further, its accessibility features may be relevant to a wide range of community research partners, including those with low literacy or who are unfamiliar with research. People with intellectual disability can help make research better. They can identify important topics to study and help create studies that are easy-to-understand and respectful. However, there are not enough tools to help involve people with intellectual disability in all parts of research. We worked with a Workgroup of 20 researchers with and without intellectual disability to make the Equipped to Engage Toolkit. First, we looked at tools people had already made to see if they were accessible. We also checked to see if there were enough tools to support teams to do all the important parts of research. Second, we made new tools that were accessible. Third, we asked five pairs of researchers with and without intellectual disability to try out the new Equipped to Engage Toolkit. The Equipped to Engage Toolkit includes 28 tools so people with intellectual disability can contribute to research teams. Teams can pick the tools they need for their studies. They can also adapt the tools to make them a good fit for their team. The tools use every day words, images, and step-by-step activities. The researchers who tried out the toolkit thought it was easy to use and helpful. They said they would use it again. The Equipped to Engage Toolkit can help people with intellectual disability be involved in all parts of a research study. The toolkit can also help people with other types of disabilities or people who don’t know a lot about research.
Public involvement and engagement in health research is widely promoted yet remains challenging and unevenly practised across health research contexts. To explain this, it has become popular to analyse so-called barriers to and facilitators of involvement. However, critics argue that such analyses are simplistic and generate little knowledge to guide action. This review critically appraises the typical form of barrier analysis concerned with public involvement in health research and proposes eight lines of inquiry that may make future analyses more insightful and useful. This is a critical narrative review informed by a systematic search of four health research databases in June 2026. Records were eligible if they stated a research objective concerning barriers to public involvement in health research and reported their findings in a topical manner, meaning that they mainly named and summarised findings and organised them in themes. These topical barrier analyses were critically appraised in relation to their capacity to improve understanding and inform involvement practice, and their findings were contrasted with broader debates about public involvement. Eighty topical barrier analyses concerning public involvement in health research were identified and reviewed. The review argues that the analyses pay little attention to what a barrier is or means, what it obstructs, when and where it arises, and whom it affects. Their recommendations are abstract, basic or largely aspirational; they link irregularly to the barriers identified; and they are usually directed towards researchers while doing little to help members of the public. The review argues that these shortcomings stem from a focus on two repetitive questions: what are the barriers, and how might they be overcome? To move beyond the analytical shortcomings, the review proposes eight new lines of inquiry: five aimed at making analyses more insightful and three at making them more useful. Unlike critics who call for barrier analyses to be abandoned, or those who call for methodological refinements, this review argues that the future of barrier analyses depends on a willingness to ask new questions that may generate knowledge that is more insightful and useful than what is already known. In health research, people are often enthusiastic about the public playing a more active role rather than being treated as test subjects. In practice, however, both members of the public and researchers find it challenging to collaborate. A common way to understand and deal with the difficulties is by making studies that identify so-called barriers and facilitators. Barriers are things said to obstruct involvement, while facilitators are things said to help it happen. In this paper, I critically discuss what such studies show and whether they offer useful guidance.The paper focuses on eighty studies that, in a simple manner, summarise what people have said about barriers and sort these findings into broad topics like "lack of time" or "lack of funding". I find that these studies repeat familiar findings across very different health research projects. Although such findings may be true, they do not tell us much about what a barrier is, what forms of involvement it blocks, where and when barriers appear, or for whom. The recommendations these studies give are often vague or basic, fail to address identified barriers, and support researchers more than members of the public.This happens because the studies keep asking the same questions: what are the barriers, and how can they be overcome? To avoid future studies confirming what we already know, I propose questions that may make them more insightful and useful for those who seek to promote public involvement in health research.
Meaningful patient and public involvement (PPI) is increasingly recognised as an important component of health research. However, relatively few publications describe patient involvement from the first-person perspective of a patient partner or patient leader. This commentary reflects on my experience as a patient leader in the COMFORT Nursing Programme, a research programme developing person-centred approaches to symptom management for people living with advanced kidney disease and their informal caregivers. I reflect on my experiences as a person living with kidney failure, an informal caregiver, and Chair of the Danish Kidney Association while working alongside researchers in the COMFORT Nursing Programme. I describe what motivated my involvement, how an equal partnership was developed, and how my lived experience, patient-leadership role and wider contact with patients and informal caregivers contributed to the research. My involvement included reviewing study materials and language, contributing to research discussions and priorities, supporting recruitment of patient partners, and participating in dissemination. I also reflect on the time and commitment required for intensive patient involvement, the challenges posed by fluctuating health, and the need for research teams to accommodate different preferences and capacities for participation. My experience illustrates that patient leadership can extend beyond sharing personal experiences to contributing to research priorities, methods, communication and dissemination. Patients and informal caregivers can bring forms of expertise that complement clinical and research knowledge. Meaningful involvement should therefore provide genuine opportunities to influence research while remaining flexible enough to accommodate individual needs, health circumstances and preferred levels of participation. Patients and informal caregivers are increasingly recognised as important partners in health research. Their experiences can help researchers focus on issues that matter to people living with a condition. However, relatively few publications describe, in the patient’s own words, what it is like to work as a patient partner and patient leader in research. In this commentary, I describe my experience as a patient leader in the COMFORT Nursing Programme, which aims to improve symptom management for people with advanced kidney disease and their informal caregivers. I live with kidney failure and receive dialysis, and I am also an informal caregiver for my husband, who receives dialysis. As Chair of the Danish Kidney Association, I also bring experience of patient advocacy and contact with a wider community of patients and informal caregivers. I describe why I became involved, how I worked alongside researchers as a member of the team, and how I contributed to the programme. My involvement included reviewing study materials and language, contributing to research discussions, helping recruit patient partners, and taking part in publications and other ways of sharing the research. My experience has shown me that patients can contribute much more than their personal stories. At the same time, being closely involved in research requires time and energy and may not be suitable for everyone, particularly when living with fluctuating health. Meaningful patient involvement should therefore be flexible and recognise that people have different experiences, skills, needs and capacities. Researchers should create opportunities for patients and informal caregivers to contribute in ways that are meaningful and manageable for them.
Effective primary care improves patient outcomes by providing comprehensive, continuous, and person-centred care. The Patient’s Medical Home vision positions primary care as the central entry point to high-quality health care in Canada. In Alberta, Person-centred Care Quality Indicators (PC-QIs) were developed with patients and health system stakeholders, are being implemented across the province to assess and report patient experiences in primary care. To ensure that patients are central to this work, a PC-QI patient Advisory Council (PAC) was created. The PC-QI PAC was formed in 2024 to support the provincial implementation of PC-QIs in primary care. The council included ten total members, eight patient research partners and two academic researchers, who co-developed a living Terms of Reference to guide the PAC’s operations. Monthly PAC meetings (later adapted to quarterly meetings with monthly newsletters) and working group meetings supported engagement. The patient engagement was evaluated twice using the Patient Engagement in Research Scale. The PC-QI PAC contributed to the development of the Terms of Reference, research participant recruitment strategies, co-development of study materials, knowledge translation activities, and research dissemination. Members also co-authored abstracts, posters, and manuscripts, and participated in academic conferences and meetings. Key facilitators of engagement included the co-developed Terms of References, transparent communication, flexible participation in working groups, appropriate compensation, and leadership roles for patient co-chairs. Identified challenges included maintaining clarity of roles, sustaining engagement in virtual settings, and ensuring that members’ contributions to the broader project were clearly communicated and understood. By managing expectations, co-developing operations, and thoughtfully sharing information, the research team built meaningful, trustworthy, and long-lasting partnerships with patient partners, which benefited every team member and the research project. This study aims to describe and analyze the co-development and work of the PC-QI PAC to identify factors that shape meaningful patient engagement in the design and implementation of research in primary care, contributing to the limited evidence on this topic. When people have a regular doctor or clinic, they are more likely to stay healthy and get the healthcare they need. In Alberta, Canada, Person-centred Care Quality Indicators (PC-QIs) are being introduced to assess and report patient experiences in primary care. To ensure patient voices are included in this process, a Patient Advisory Council (PAC) has been established. This paper examines how the council was created, and how it helps patients be meaningfully involved. The PC-QI PAC was formed in 2024 and includes patients with diverse lived health experience working together with researchers. The group met regularly, and adapted since 2024 to help members collaborate according to their capacity and interest. PAC members helped develop and update guiding documents, and co-created research materials for the project. They also co-presented this work at academic conferences. Patient engagement was continuously evaluated using anonymous feedback tools. Many things helped to make engagement on the PAC meaningful. Clear guiding documents and honest communication were critical, as were ensuring patients had flexible ways to participate, including leadership roles for patient partners. Providing compensation to patient partners was also important. Some challenges that were encountered include ensuring role clarity, maintaining member engagement in virtual meetings, and clearly communicating and recognizing patient partners’ contributions. Overall, this paper describes how meaningful partnerships between researchers and patient partners can improve research and health care. The lessons learned from the experience of the PC-QI PAC offers practical guidance for future projects aiming to involve patients in research and healthcare improvement.
Deliberative Dialogue (DD) is a structured participatory approach that brings together research evidence, professional expertise, and lived/living experience to support informed discussion and decision-making in health research. DD is increasingly used in the co-design, co-implementation, and co-evaluation of health-promoting interventions, where decisions must be both evidence-informed and responsive to local contexts, priorities, and needs. However, published studies vary considerably in how DD is described and reported, particularly in relation to facilitation, evidence use, participant preparation, power dynamics, and follow-up. This scoping review examined the application of DD in health services research, focusing on its methodological processes, reported outcomes and challenges, engagement of different interest-holders, and the rationales underlying its use. A scoping review was conducted following Arksey and O’Malley’s framework and reported in accordance with PRISMA-ScR guidelines. Searches of OVID Medline, PsycINFO, PubMed, CINAHL, and Scopus identified 1,793 records. After screening and consolidating duplicate reports, 15 unique studies met the inclusion criteria. Data were extracted using a template informed by the Guidance for Reporting Involvement of Patients and the Public (GRIPP2), the Consolidated Standards of Reporting Trials (CONSORT), and Boyko et al.’s model of DD. The review was conducted using a critical Patient-Oriented Research (cPOR) approach, which centres lived/living experience, promotes shared decision-making between patient partners and researchers, and attends to the influence of power and structural contexts on knowledge production. The interdisciplinary team, including patient partners, researchers, clinicians, policymakers, and decision-makers, co-developed the study, contributed to data interpretation, and collaboratively refined the findings through iterative and reflexive discussion. The 15 included studies were published between 2012 and 2024 and represented diverse geographic and health-system contexts. DD was used to support intervention co-design, implementation planning, evaluation, priority-setting, guideline development, and service improvement. Studies consistently reported the involvement of multiple interest-holder groups and the development of practical outputs, including curricula, decision aids, care models, action plans, guidelines, and priority-setting frameworks. However, reporting of methodological processes was inconsistent. Only a minority of studies described facilitation protocols, participant preparation, strategies to address power dynamics, accessibility supports, or follow-up activities. While DD was associated with enhanced trust, mutual understanding, contextual relevance, and collaborative decision-making, evidence of longer-term impacts was limited. The synthesis also revealed substantial variation in how studies reported participant engagement, evidence use, consensus-building processes, and the translation of deliberative outputs into intervention-related decisions. This review highlights DD as a valuable approach for collaborative, evidence-informed, and context-sensitive health services research. Across the included studies, DD was used to bring together diverse forms of knowledge and generate practical outputs to support intervention development and improvement. However, methodological details related to facilitation, accessibility, participant support, management of power dynamics, decision-making processes, and longer-term impacts were often underreported. These gaps point to the need for more transparent and equity-oriented reporting of DD, particularly in relation to how people with lived/living experience are engaged and how their contributions influence intervention-related decisions. Strengthening reporting in these areas may improve the transparency, reproducibility, and accountability of DD in the co-design, co-implementation, and co-evaluation of health interventions. Patients and members of the public are increasingly involved in health research as partners rather than participants. This means they help shape research questions, programs, services, and decisions based on their experiences and expertise. However, it is not always clear how these partnerships work in practice, how decisions are made, or how patient contributions influence outcomes. This study examined deliberative dialogue, a structured approach that brings together patients, community members, health professionals, researchers, and decision-makers to discuss health issues and make decisions. Through guided discussions, participants exchange knowledge, explore different perspectives, and work together to identify solutions. We reviewed 15 published studies that used deliberative dialogue in health research. The research team included two patient partners with experience in collaborative research. As members of the team, they contributed to developing the research questions, refining the review methods, interpreting findings, identifying gaps in the literature, and developing study outputs. Their lived and living experience informed decisions throughout the study and strengthened the relevance of the findings for patients, communities, and researchers. Most studies used deliberative dialogue to inform the design of health programs or services (9 studies). Fewer used it to support implementation (4 studies) or evaluation (2 studies), highlighting an important gap in the field. All studies involved participants from diverse backgrounds, including patients, health professionals, researchers, and decision-makers. However, only a small number clearly described how discussions were facilitated, how accessibility or equity considerations were addressed, or what happened after the dialogue ended. For example, only five studies reported facilitation processes, three described strategies to support accessibility or equity, and two reported follow-up activities. Across the studies, deliberative dialogue helped build trust, strengthen shared understanding, and develop solutions that reflected local needs and priorities. At the same time, many studies did not provide enough detail about how the process was conducted, including how decisions were made and how power differences were addressed. This makes it difficult to assess the quality of deliberative dialogue processes, apply them in new settings, and improve them over time. Overall, our findings suggest that deliberative dialogue is a valuable approach for collaborative decision-making in health research. However, clearer and more consistent reporting is needed to improve transparency, accountability, and the quality of participation. Better reporting can help researchers, patients, and communities understand what works, identify areas for improvement, and strengthen the development of health programs and services that are responsive to the people they are intended to serve.
To assess the feasibility and participant-reported perceptions of a multiphase training program that jointly prepares patients and researchers for collaboration in dry eye patient-centered research. Cross-sectional, mixed methods study. August–September 2025. Initial cohort: Dry eye patients/caregivers (8) and researchers (3). Age 18–75. High school to postgraduate education. Eastern and Central time zones. English fluency. Access to computer, internet. The participants were selected through purposive, snowball sampling. Eight (83
There are many stakeholders involved in cancer screening and cancer-related research, including those from the micro, meso, and macro levels. The ways in which stakeholders are engaged are numerous, with some methods being more active than others. There has been limited investigation into which stakeholders are being engaged, how they’re being engaged, and if these stakeholders are being engaged together. The aim of this scoping review was to explore methods of active stakeholder engagement with multiple levels of stakeholders in cancer-related studies. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. Articles were included for analysis if they included, at least, two levels of stakeholders who were involved in active stakeholder engagement and originated from the Western countries. There were no restrictions on the date of publication, language, or study design. One hundred and seventy-eight studies met the inclusion criteria. Most articles originated from the United States, were published between 2020 and 17 June 2026, and the topic was not related to any specific cancer type. The micro- and meso-level stakeholder combination was most frequently reported, and 58.4
Patient and public involvement (PPI) in medical research has increasingly been incorporated into research policies and funding frameworks in Japan, but empirical evidence on how patients and family members perceive PPI remains limited. This is particularly important in rare disease research, where patient populations are small and involvement may depend on organised patient communities. This study explored awareness, experience, perceived benefits and barriers, and support needs regarding PPI among rare disease patients and family members in Japan. A cross-sectional online survey was conducted between December 2021 and April 2022 through two national rare disease patient network organisations. Adults with a rare disease or family members of such individuals were eligible. Of 218 responses, 212 met the eligibility criteria and were analysed. Subgroup comparisons used Pearson’s chi-squared test, with Fisher’s exact test when expected cell counts were below 5. The sample comprised 101 patients (47.6
Abstract Background In recent decades, there has been a growing consensus that incorporating patient, carer, community and public participation is important. How this is accomplished remains more contested. Co-production of knowledge in research is described as one potential approach; however, its theory and practice often remain unclear. The requirement of sharing power disrupts traditional research dynamics and can be challenging in many settings. Global South epistemologies, which can be interpreted as offering a framework for understanding power sharing and empowerment, hold the potential to aid co-production planning. Objective To present a reflective, theory-informed case, drawing on preparatory efforts for the development of a project within the context of a larger research study on Congenital Zika in Brazil. Methods By interpreting Paulo Freire’s philosophy and its concepts of dialogical action and conscientisation (critical consciousness) as a framework for understanding issues related to power, reflective planning for future co-production work with community members and groups was carried out. Results: early insights from our reflective planning Reflective planning for co-production through a Freirean lens provided early insights on power sharing and practical challenges. Such early insights include that knowledge production is an inherently political process, requiring reflexivity and openness to tension, and the need for attention to structural power differences within research teams and between institutions. Sharing power can be an inherently challenging process due to complex power hierarchies between and within countries and current research funding and publishing dynamics. Conclusion Early insights for our reflective planning for future co-production suggest that engagement with Freire’s philosophy at this stage offers a useful framework for critical and contextually grounded approach to co-production which re-centres power sharing, dialogue, and social transformation. Embedding such theory in planning holds the potential to lead to co-produced research which is more authentic, especially in Global South settings characterised by deep social and historical inequities.
Involving a patient and public involvement (PPI) peer researcher with lived experience in clinical research is a relatively new concept and to our knowledge, has not been described in adult cardiac surgery. The integration of a PPI peer researcher with a lived experience of a surgical site infection (SSI) was an exploratory component of work associated with an NIHR-funded, mixed-methods study evaluating patients and caregivers’ preferences for post-discharge SSI monitoring. The PPI peer researcher worked alongside an academic colleague, participating in patient observations, qualitative interviews, and thematic analysis. Their shared and personal experiences appeared to encourage some participants to disclose nuanced concerns that differed in tone and content from those shared with the academic researcher, offering an additional perspective to inform collaborative reflection. This approach did, however, present a series of practical challenges: inconsistent hospital approvals, fragmented site-based training requirements, and unclear approval processes created barriers and increased the workload of the academic team. This commentary aims to describe the practical feasibility, perceived benefits and challenges encountered when integrating a PPI peer researcher into this cardiac surgical research programme. This commentary highlights some of the challenges of involving a patient and public involvement (PPI) peer researcher with a lived experience of surgical site infection (SSI) in research on wound monitoring for cardiac surgery patients. Unlike traditional research, led solely by academics, this co-production partnered a PPI peer researcher and an academic researcher to conduct interviews, site observations, and thematic analysis. The PPI peer researcher’s lived experience of an SSI appeared to encourage patients to speak more openly about their anxieties and daily practical concerns, providing some candid insights. This provided a perspective that would not otherwise have been recognised. It was not without its challenges; hospitals struggled to accommodate the role of PPI peer researchers, site-based training was repetitive, time-consuming, and support was inconsistent. These barriers highlight the need for streamlined credentialing and standardised protocols for PPI peer researchers to facilitate systematic evaluation of the PPI peer researcher role.
Sight loss will affect an estimated 2.7 million people in the UK by 2030 and is associated with substantial reductions in quality of life, mobility, independence, and poorer mental health. Our own research has demonstrated that depressive symptoms are highly prevalent among blind and partially sighted people yet often remain unrecognised and untreated. To effectively disseminate our research to healthcare professionals, we involved members of the public with lived experience of sight loss in an art installation. The aim of this project is to evaluate the feasibility and value of using such an arts-based approach as a method for involving blind and partially sighted individuals in dissemination, and here we reflect on what all stakeholders learnt from the process. We recruited eight blind and partially sighted storytellers to share themes from our research using narratives of their own lived experience, focusing on the emotional impact of sight loss and professional interactions. Audio-recorded stories and accompanying portraits were developed into Eight Voices in Darkness, a sound installation designed to reflect both the literal and metaphorical darkness associated with vision impairment and depression. The installation was exhibited publicly over three days alongside workshops for eyecare professionals and mental health practitioners. Visitor and participant feedback (n = 92) was analysed using Pendleton’s reflective framework to explore what went well, what did not, and what was learned. Visitors consistently reported an enhanced understanding of the mental health consequences of sight loss, valuing the authenticity, emotional resonance, and individuality conveyed through the artistic format. Many indicated intentions to adopt more empathetic, patient centred practices, improve accessibility, and initiate conversations about mental health. Storytellers highlighted the value of being heard and connecting with others’ experiences. Researchers and the artist reflected on the strengths of partnership with the charity, the power of the immersive format, and challenges relating to managing expectations. The process generated important insights into involving the public in dissemination through art, including ethical editing, audience preparation, and sustaining involvement. Involving people with lived experience in arts-based dissemination offers a powerful and engaging method for disseminating research findings to professionals to improve healthcare. Future work should refine practical elements and enhance coproduction. Many people in the UK live with sight loss, which can make every aspect of everyday life harder, including tasks like reading and mobility. Our research showed that sight loss can also impact mental health, and that many people with sight loss do not get the emotional support they need, partly because some eyecare professionals do not realise how common mental health problems are among this group. Our aim was to involve patients and the public, specifically blind and partially sighted people, in sharing our research effectively so that vision-related professionals and the public could learn how sight loss affects mental health. We created an art project called Eight Voices in Darkness. Eight individuals talked about the key topics noted in our previous body of research on sight loss and mental health: how their sight loss affects their feelings, challenges faced, and support required. Their stories were recorded, along with a portrait photo of each person. An artist turned these stories into an art installation. In a quiet, dark theatre, visitors could sit and listen to short parts of each person’s story. Over three days, almost 200 people visited. Many said the experience helped them understand sight loss in a new and powerful way and they would try to be more kind, patient, and willing to talk about mental health in the future. The storytellers also said it felt good to be listened to. This project showed that art is a valuable mechanism to involve individuals with lived experience in sharing research with professionals and the public to improve healthcare. Research teams must consider practical and ethical considerations when individuals’ stories are harnessed to share research findings and allow sufficient time and resources.
Frailty is a multidimensional condition that increases vulnerability to poor health outcomes, yet older adults living with frailty are often underrepresented in research or involved only in limited ways. Engaging people with lived experience can improve the relevance, acceptability, and impact of research, but little is known about the involvement of older adults living with frailty across the research process. This scoping review explored how engagement is practiced, the roles older adults play at different stages of research, and the effectiveness of these approaches. The review followed the methodological guidelines of the Joanna Briggs Institute. Five databases and Google Scholar were searched for articles published in English between 2005 and 2025. Eligible studies included those that described when and how older adults living with frailty were involved in the research process. Two reviewers independently screened titles, abstracts, and full texts to select articles and extracted data using a structured template. Data were analyzed to categorize engagement approaches, assess levels of engagement across research stages, and evaluate the effectiveness of these approaches. Ten studies met the inclusion criteria. Most used participatory and action-oriented, co-design and human-centred design, patient and public involvement and priority-setting, or dialogic and capacity-building approaches. Engagement was strongest during the early stages of research. Older adults living with frailty frequently contributed to identifying priorities, shaping study aims, refining tools and interventions, and participating in collaborative workshops. Across studies, involvement was described as meaningful and personally empowering, contributing to increased confidence, social connection, and a sense of being valued. Engagement also produced tangible research outcomes. However, involvement declined substantially in later stages. Only a few studies engaged older adults in interpreting data, reviewing results, co-presenting findings, and contributing to implementation efforts, and no study provided shared decision-making authority across the full research cycle. This review shows that engaging older adults living with frailty in the research process is both feasible and valuable. To advance the field, future work must extend engagement beyond early stages by fostering continuity, transparency, and shared decision-making through flexible practices and explicit attention to power and governance. People living with frailty often face physical, cognitive, and social challenges that increase their risk of poor health and reduce their ability to participate fully in their communities. Although their experiences are important, older adults living with frailty are not often included as partners in research. This means that studies may overlook what matters most to them. We carried out a scoping review to learn how older adults living with frailty are currently involved in research and how well these approaches are working. We searched for studies from the past 20 years that described involving older adults with frailty in any stage of the research process—from choosing topics to sharing results and acting upon them. Only 10 studies met our criteria. Most included older adults as partners early in the process, particularly when identifying research priorities and designing new programs or tools. Older adults who were involved in these processes often described feeling valued, heard, and motivated. Their involvement also helped make research projects more relevant and practical. However, involvement dropped off in later stages. Few studies included older adults in analyzing data, sharing results, and putting findings into action. In every study, final decision-making remained with researchers. Overall, we found that meaningful involvement is both possible and beneficial, but true shared decision-making is still uncommon. More support, flexibility, and long-term commitment are needed to ensure older adults living with frailty can participate throughout the entire research process.
Patient Public Involvement is increasingly promoted to enhance the relevance, feasibility, and ethical grounding of clinical research, particularly in oncology, where trials can be demanding, and quality-of-life trade-offs are substantial. Despite this, involvement often remains fragile and inconsistently embedded in routine trial practices, especially where shared operational standards are limited. This study examines why involvement remains difficult to institutionalise in Italy, that is, to move from informal, individually dependent practice toward formally recognised and stable roles within research routines, by comparing perspectives from principal investigators and patient organisation representatives. We conducted 34 semi-structured interviews with principal investigators and patient organisation representatives and analysed the data using inductive thematic analysis. Interviews were audio-recorded with consent, transcribed verbatim, and analysed using an inductive thematic analysis. Through iterative coding and thematic clustering, recurring barriers and areas of convergence and divergence between stakeholder groups were identified. The resulting themes were subsequently organised into four cross-cutting dimensions—cultural, organisational, operational, and institutional—to support comparison and reporting. Participants in both groups described a shared set of interrelated barriers but interpreted and prioritised them differently. Cultural barriers centred on tensions around expertise, authority, and the perceived legitimacy of experiential knowledge in trial design. Organisational barriers included fragmentation within the patient organisation landscape and misalignment of priorities between scientific endpoints and patient-relevant concerns. Operational barriers reflected workload pressure, limited integration of involvement into trial workflows, and asymmetries in language and expertise that constrained informed participation. Institutional barriers included discontinuity, limited feedback to patients and organisations, and the absence of clear guidance on when and how to engage patients consistently. Together, these factors contributed to involvement being late, episodic, and dependent on individual initiative rather than routine practice. Involvement in Italian oncology research remains fragile because multiple barriers intersect across culture, organisation, operations, and institutions, rather than acting in isolation, while stakeholders often hold different assumptions about roles and value. Strengthening involvement requires more explicit operational guidance, dedicated resources, and shared capacity-building to support earlier, more consistent, and more sustainable collaboration. Patients and patient organisations are increasingly encouraged to contribute to clinical research so that studies better reflect real-life needs and are easier, fairer, and more relevant for those taking part. This is especially important in cancer research, where treatments and clinical trials can be long, complex, and disruptive to everyday life. However, in Italy, patient involvement is still not routine in research and often depends on individual researchers' willingness. In this study, we explored why this happens by interviewing two groups: principal investigators, who design and lead clinical studies, and representatives of patient organisations, who support patients and often interact with research teams. We asked about their experiences and about the main difficulties that make patient involvement hard to achieve in practice. Both groups recognised many of the same problems, but often understood them differently. Some barriers are linked to culture and professional roles, including uncertainty about who should influence research decisions and how much value should be given to patients’ lived experience. Others are organisational and practical, such as fragmented collaboration, lack of time, heavy workloads, and limited resources. Communication is another challenge, especially when research is presented in highly technical language that non-specialists find difficult to understand. There are also broader system-level problems, including a lack of continuity, limited feedback to patients and organisations, and no clear shared guidance on how involvement should happen. Overall, patient involvement remains fragile because these barriers interact with one another. Clearer guidance, dedicated support, and shared training could help make involvement earlier, more consistent, and more meaningful.
Public involvement in health research has been defined as research carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’, or ‘for’ them. We examined trends in patient and public involvement (PPI) prevalence in health research based on reporting in original research articles published in ten general medical journals over 25 years (2000–2024). For this bibliometric analysis, OVID Medline from 1 January 2000 to 31 December 2024 was used to identify a random sample of 1,000 individual studies, with 4 articles per journal per year selected from 10 general medical journals (5 adult and 5 pediatric) published over the 25 year-period. All study designs were included. We defined adult studies as those with participants 19 years or older and pediatric studies as those with participants 18 years or younger. Four reviewers independently classified studies as PPI + or PPI- and extracted data on primary study characteristics and on PPI methods for PPI+ studies. Log-linear regression was used to analyze trends over time. Of 1000 articles, 97/1000 reported PPI (prevalence 10
Abstract Background The COVID-19 pandemic significantly impacted immunocompromised individuals, particularly transplant recipients. Despite their vulnerability, national- and international-level research often lacks direct input from this community. In response, the Canadian Donation and Transplantation Research Program (CDTRP) implemented an integrated knowledge translation (iKT) strategy that involved patient, family, and donor (PFD) partners as co-leads and decision makers throughout the research process. Methods Beginning in 2022, CDTRP adapted a co-engagement model to identify research priorities and inform study design, conduct, and knowledge mobilization related to COVID-19 issues for transplant recipients. Diverse stakeholders, including researchers, clinicians, policymakers, trainees, transplant-focused organizations, and PFD partners, collectively co-developed the TREAT-COVID research project. In 2022–2023 CDTRP hosted a series of four national forums that were co-designed and co-facilitated by PFD co-leads, enabling shared decision making and iterative refinement of research priorities and strategies. This paper provides an overview of the iKT strategy implemented, including objectives, engagement processes, outputs, resulting study adaptations, and lessons learned. Results Each forum generated new insights and actionable changes. Forum 1 identified research priorities, including clinical therapeutics, psychosocial needs, quality of life, economic burden, and recovery-related supports. Forum 2 emphasized mental health and support for transplant recipients and their caregivers. Forum 3 identified the distinct but complementary priorities of transplant recipients and their caregivers, such as clinical care and mental wellness, respectively. Forum 4 addressed barriers to recruiting study participants and refined communication strategies. These forums collectively shaped the TREAT-COVID research project by informing study priorities, data collection tools, recruitment strategies, and knowledge mobilization. Conclusions This paper details the iKT strategy implemented by the CDTRP to engage diverse stakeholders in COVID-19-related research for transplant communities. Meaningful and structured patient and family involvement in national health research during a public health emergency was prioritized. By involving patient and family partners in governance, facilitation, study refinement, recruitment, and dissemination, CDTRP advanced a collaborative and equity-driven iKT model. The paper contributes an operational example of national-scale patient and family co-leadership in time-sensitive research.
Family engagement at a research project-level is well-studied in childhood-onset disability research, yet organizational-level family engagement (e.g., advisory boards, policy review, mentorship) remains less understood. The objective of this organizational research study was therefore to describe (1) how families are currently engaged at two childhood-onset disability research organizations and (2) the strengths, weaknesses, opportunities, and threats (SWOT) to organizational-level family engagement. A qualitative descriptive approach was used, including online surveys, focus groups, and interviews to collect data from organizational leaders, families, researchers, and trainees from two childhood-onset disability research organizations. Structured deductive content analysis using a SWOT matrix was employed to categorize and present the data. Strengths included each organization’s ability to value and evolve engagement practices and dedicate organizational resources to ensure families felt represented and supported. Simultaneously, limited training, financial support, and formal structures to embed families within the organization were noted as weaknesses. Across both organizations, opportunities to increase infrastructure and training were described. Despite organizational efforts, families are not always seen as part of the academic community, which pose threats to meaningfully embedding families at an organizational level. Findings highlight the value that both organizations place on family engagement, where families have been embedded within organizational processes and structures. Several strengths within the organizations were apparent and were matched with need for greater infrastructure, engagement support, and representation of diverse families. Opportunities described included further training and embedding families across the organization. We anticipate that without broader changes in academia, challenges to organizational engagement of people with lived experience will continue. Organizations such as those presented in this paper can support organizational-level family engagement through continued training, sharing current practices, and developing policies and practices other organizations may adopt. Patients and families are more commonly partnering on childhood disability research projects but less commonly partnering at the organizational-level (e.g., advisory boards, policy review, mentorship). We wanted to understand more about this and the strengths, weaknesses, opportunities, and threats to this practice. We asked organizational leaders, researchers and trainees, and family members at two childhood-onset disability organizations in Canada about family engagement practices at the organizational-level. We held interviews and focus groups, and used online surveys to help us explore this topic. We heard that organizations really valued families. Lack of training, financial support, diversity of families, and ways to engage families in the organization were barriers. Increasing infrastructure and training were identified as ways to support organizational-level family engagement.
Empowering children and young people (CYP) to actively participate in research development is essential to ensure impactful outcomes. Meaningful involvement helps researchers to pose relevant questions, design acceptable methodologies, and disseminate findings effectively. However, the inclusion of CYP in research, particularly in paediatric intensive care (PIC), is rarely reported. This is partly due to the challenging PIC environment, and most patient and public involvement and engagement activities (PPIE) focus only on the parents’ experience and perspective. The Intensive-Share group was established in Scotland in 2022 to facilitate PPIE activity in PIC research. The group includes family members with a range of lived experiences with the youngest member aged 7 years. They meet regularly to contribute to various aspects of research including research design, study materials and procedures, and public engagement. This article describes the co-production approach adopted in the ‘What is data?’ Project, which was co-created with researchers based on an idea from the Intensive-Share group. The project aimed to co-develop a short-animated video to explain healthcare data research to CYP in an engaging and accessible format. CYP meaningfully participated in all stages of the project and were integral to its success. Initial evaluations indicated the animation was well-received by families and they self-reported improved understanding of and willingness to participate in research. Co-production with CYP can be resource-intensive and challenging, but this project demonstrated it was feasible and incredibly valuable. Meaningful and authentic involvement challenged the research teams assumptions on inclusive language and the nature and level of involvement CYP preferred. Adopting a broader approach to PPIE in PIC research to include paediatric patients and siblings, perhaps on a national level, could facilitate similar initiatives in research communication and co-production. The open-source animated video is available as a resource to the wider research community to aid communication about paediatric healthcare data research. Actively involving children and young people (CYP) in research development is essential for research to have an impact. CYP can help ensure communication about research is understandable, engaging and addresses what is important to them. However, there are very few reports of involving CYP in developing research information, particularly in paediatric intensive care (PIC). Most examples focus on parents, not on the valuable perspectives of paediatric patients and their siblings. To address this, the Intensive-Share group was established in Scotland in 2022. The group includes families with a range of experiences of PIC. Members meet regularly to contribute to various aspects of research development including project questions, the way projects are carried out (methodology), and sharing research findings with the public. This article shares experiences from the ‘What is data?’ Project which was created through a partnership between researchers and the Intensive-Share group. The project took a co-production approach to develop a short-animated video to help CYP understand how healthcare data is used for research. CYP had important roles in all stages of the project, particularly in ensuring the language in the animation was accessible and relevant. The animation was well-received by families and they reported it improved their understanding of healthcare data research. The project underscores the value of involving CYP in research communication, not just parents, and research teams would benefit from resources to support such initiatives. The animation is an open-source resource to aid researchers communicating with families about healthcare data research.
