Locally recurrent rectal cancer (LRRC) is an emerging area for research; however, it represents significant challenges as a relatively rare form of advanced pelvic malignancy, from both a recruitment and study setup and delivery perspective. To date, there have been relatively few published trials in this setting. High-quality, multi-centre, prospective studies could offer helpful insights regarding the challenges associated with delivering studies in rare disease settings such as LRRC, and how to effectively address them. The Locally Recurrent Rectal Cancer-Quality of Life (LRRC-QoL) study is an international, multi-centre, mixed-methods study of health-related quality of life (HrQoL) in LRRC. The International Surgical Trials Toolkit was utilised as a guideline in navigating site setup processes and to describe the challenges encountered during this study. A modified Quintet Recruitment Intervention (QRI) was used as a framework to identify recruitment challenges and drive improvements. Overall, 227 patients were recruited to the LRRC-QoL study across 14 countries. Significant challenges were encountered during site setup, including issues related to legal agreements which were further complicated by Brexit, expenses related to translation, and requirements for multiple ethical approvals. Delays during study setup and recruitment challenges occurred due to the COVID-19 pandemic. Several strategies were identified through the modified QRI with a positive impact on recruitment. Recruitment pathways were refined to a more streamlined, centralised approach, facilitated by verbal consent to contact. Recruitment rates also improved with the introduction of multiple options for participation, including traditional paper-based methods, online, and via telephone. Patient information leaflets were refined following patient and public involvement (PPI) work. Several approaches identified during the LRRC-QoL study should be considered in the development of future studies and trials recruiting patients with LRRC. These include undertaking PPI during study development, identifying flexible recruitment strategies which complement sites' existing clinical processes, and partnering with existing collaborative networks. Study registration The LRRC-QoL study registration reference: ISRCTN13692671 (https://doi.org/10.1186/ISRCTN13692671).

Aphasia increases the risk of mental health issues, yet psychological care for aphasia (APC) is not routinely available. Given the significant psychosocial impact, APC requires input from multiple disciplines and settings, and necessarily responds to a person's needs, which shift over time. As a complex intervention, it is important that service providers, users, and policymakers are involved in developing effective and contextual implementation strategies. In this study, the aim was to meaningfully engage people with aphasia and inter-disciplinary aphasia clinicians to create a shared vision of ideal APC and to identify context-specific implementation considerations in Ireland. A series of interdisciplinary clinician research workshops and parallel aphasia Public and Patient Involvement (PPI) meetings were convened. Participatory Learning and Action (PLA) tools and techniques supported inclusive research spaces; and discussions were scaffolded by constructs from the implementation science framework, Normalisation Process Theory (NPT). PPI contributors inputted into planning the clinician workshops and reviewed and commented on the discussion summaries. Key principles for APC and Ireland-specific implementation considerations were identified. These included the need for a unified vision, clear clinical roles and referral pathways, improved team structures and resources, clinician training, and active involvement of people with aphasia in APC design. Through NPT and PLA informed workshops, people living with aphasia and clinicians generated ideas about how an interdisciplinary coordinated model of APC might be developed and implemented. The findings offer early guidance for developing coordinated, interdisciplinary APC in Ireland. The participatory implementation approach may be adapted to other conditions or contexts to support locally relevant intervention planning.

Abstract Introduction Muslim patients often avoid medicines containing ingredients prohibited by their faith (haram), such as alcohol, gelatine, or porcine derivatives. While Islamic law permits exceptions based on necessity (darura) or biotransformation (istihala), the way these principles influence medication adherence and shape patient–healthcare provider (HCP) interaction is underexplored.[1] Aim To explore how Muslims in the UK apply Islamic moral reasoning to medication adherence decisions involving medicines containing haram ingredients. Methods Muslim adults from diverse ethnic backgrounds were purposively sampled through mosque-based recruitment strategies, including post-Friday prayer announcements, poster advertisements, mosque-affiliated social media, and key informants. Semi-structured in-depth interviews were undertaken online through Zoom, exploring participants’ experiences of using or declining medicines they considered haram. Transcripts were analysed using Braun and Clarke’s reflexive thematic analysis (RTA), with themes constructed inductively.[2] Interview development was informed by a prior scoping review and mosque-based public and patient involvement (PPI), within a qualitative, interpretive approach. Two co-authors independently coded a subset of transcripts to enrich the reflexive process, and feedback from face-to-face member checking allowed the final theme summaries to be refined and validated. Sampling was guided by information power and thematic depth in line with RTA; the study did not seek data saturation but focused on contextually situated theme development. Data interpretation was guided by the Necessity-Concerns Framework (NCF) and locus of control (LOC) theory. Results Thirteen adult Muslims with a range of ethnic heritages participated in the study. Four main themes were developed: (1) halal as worldview; (2) motivations for consumption; (3) minor illness or major disease; and (4) personalised care. These themes reflected how participants perceived illness severity, the semantic framing of ingredients, and the extent to which HCPs were viewed as trustworthy, culturally competent, and responsive to religious disclosure, all of which shaped adherence decisions. The rulings of darura (necessity) and istihala (biotransformation) were applied flexibly in chronic or life-threatening illnesses. Participants commonly avoided prohibited medicines for minor conditions, instead favouring complementary and alternative therapies perceived as natural and aligned with their religious beliefs. Conclusion Islamic moral reasoning influenced how participants engaged with medicines deemed haram. Supporting adherence requires pharmacy practice that incorporates religious literacy, responds to concerns about transparent labelling, and invites faith-sensitive communication. These steps may support patient-centred care by aligning religious and ethical reasoning with treatment decisions. In doing so, they may foster trust, enhance adherence, and support more equitable care for Muslim patients. Strengths of the study include its depth and reflexivity through RTA, as well as the use of member checking. However, transferability may be limited due to the sample being primarily mosque-based and from a single UK region.

The adverse effects on parent and child outcomes of poverty and stressors associated with low income are well established. With notable exceptions, however, the potential role of frontline services in improving family financial well-being is underexplored. This article outlines how patient and public involvement (PPI) was initiated early on in research on financial well-being support (FWbS). It illustrates how research can build on and integrate what parents say about services and how to research them. The involvement work was undertaken in one city in part to inform the adaptation of an income maximisation service to be delivered in local children's centres. Parents were involved using two approaches: open events with 'silent conversations', and individual conversations. Parents were invited to comment on four issues: which families should receive FWbS; how to make FWbS accessible; the process of delivering FWbS; and the nature or content of FWbS. The article describes how we approached parents via existing services, how conversations were facilitated and how parents' views informed the immediate service redesign and new research on FWbS to improve parent and child outcomes. It also identifies learning, for instance on engaging people not involved in services, involving people throughout a project and offering training and support for researchers and service providers around how to involve people with lived experience of poverty in respectful and meaningful ways.

Pathogen genomics is increasingly used in publicly funded studies and has important implications for understanding infectious diseases and their spread. However, unlike many other research areas, it has seen little patient and public involvement (PPI), thereby missing opportunities to enhance both research processes and outcomes. This project addressed that gap by exploring the potential contribution of PPI to pathogen genomics, using whole-genome sequencing (WGS) data visualisation as an exemplar.Following ethical approvals, three 2 h PPI workshops involving five public contributors and six academic contributors were held online. Sessions were documented using visual meeting notes. Workshops were audio-recorded, transcribed and analysed using an iterative thematic analysis.Two interconnected themes were identified. First, effective public involvement required collaborative sense-making, achieved through co-producing a shared knowledge base, establishing consistent terminology and developing effective practices for knowledge exchange. Second, participants highlighted three priority areas for meaningful PPI in future pathogen genomics research: (i) prioritising research questions, (ii) contributing to decisions about data collection and use and (iii) supporting the communication of findings.Although pathogen genomics is technically complex, this did not prevent productive discussion about how, where and why PPI could be integrated into research. Expanding PPI in this area could help align pathogen WGS research with patient priorities, inform approaches to data governance and improve the accessibility of research outputs to the public. Realising this potential, however, will require active engagement from researchers in the field.

Patient and public involvement (PPI) in research is increasingly recognised for its potential to enhance feasibility, improve relevance and foster collaboration at different stages of a study. Reporting guidelines such as GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) have been developed to help improve completeness and transparency in PPI reporting. This meta-research project aims to assess the impact of the GRIPP2 reporting guidelines through citation and alternative metrics, analysing its uptake or adoption across authors, institutions, journals and countries, as well as its practical application in reporting PPI within diverse research designs. This protocol for a meta-research project consists of two studies. In Study 1, we will conduct a search across Web of Science, Scopus and Google Scholar to identify all publications citing the GRIPP2 guidelines (planned for July 2026 using forward citation analysis). Retrieved records will undergo standardised processing and structured de-duplication to ensure each citing article is represented once. Following de-duplication, data from unique citations-including title, publication year, journal, subject category, keywords, document type, citations, authors' names, institutional affiliations, country and funding sources-will be collected. Citation counts, alternative metrics (eg, mentions in policy documents, news media) and knowledge production patterns across authors, institutions, journals and countries will be analysed to assess GRIPP2's impact and uptake of the guidelines. Descriptive analyses will be conducted (including the number of papers, citations, authors, countries, journals, keywords, funding, field distribution and main collaboration metrics). Network analyses will be carried out to study the structure of collaborations. In Study 2, we will evaluate a random sample of 300 research articles citing GRIPP2, including randomised trials (n=100), systematic reviews with meta-analyses (n=100) and health economic evaluations (n=100). If an insufficient number of citing studies are available within these categories, we will include additional study types identified in Study 1 (eg, study protocols, observational studies, mixed-methods or qualitative research studies and other types of reviews). Reporting and PPI practices in each article will be extracted by at least two researchers using a standardised data extraction form. Information on general, methodological and PPI items will be analysed and reported, stratified by study design (eg, randomised trials vs systematic reviews vs health economic evaluations). Due to the nature of the proposed study, no ethical approval will be required. All data will be deposited in a cross-disciplinary public repository. It is anticipated the study findings could be relevant to a variety of audiences. Study findings will be disseminated at scientific conferences and published in peer-reviewed journals. Open Science Framework: https://osf.io/et85d.

Evolving approaches to broaden public and patient involvement in cancer research.

It is important that midwives discuss good nutrition and optimal weight during antenatal appointments, yet this rarely happens. Earlier research suggests that limited time, plus insufficient knowledge and skills are barriers to this. To engage antenatal midwives in stakeholder discussions to explore their perspectives on the design and delivery of a nutrition resource. This qualitative study used a Participatory Action Research (PAR) approach. Twenty-six midwives (19 community-based; 7 hospital-based) were purposely recruited from four NHS sites in Northwest England. Four stakeholder workshops were co-designed and facilitated by researchers. In Phase 1, midwives reflected on current practice and challenges in delivering diet and weight advice. In Phase 2, they co-developed ideas for practical, acceptable nutrition resources. Data collection included participant-generated artefacts, post-it notes, visual maps, field notes, and verbatim reflections. Data were analysed inductively using Reflexive Thematic Analysis, and reflexivity was maintained throughout, recognising researchers' influence within this participatory design. Two master themes were developed: (1) "We Want to Help, But We're Not Trained for This", highlighting systemic, professional, and emotional barriers to providing support and (2) "Make It Real and Make It Work", midwives' co-produced recommendations for inclusive tools and training that are realistic, culturally sensitive, and integrated into existing workflows. Midwives expressed a clear need for improved education and resource support. Despite systemic constraints, they co-produced practical and implementable solutions. Supporting midwives through evidence-based, context-specific tools and training may enhance nutrition conversations in antenatal care and improve maternal and infant health outcomes. Three culturally diverse Patient and Public Involvement (PPI) representatives were recruited to assist with the validation of the analytical findings. One was a midwife working in antenatal care; the second was a recent service user (a postnatal woman) with an Eastern European background, and the third was a midwife (currently on maternity leave) with a South American background. Commentary from these PPI representatives was used to validate the analysis and support the interpretation of the data. Additionally, they were invited to provide commentary on the draft manuscript and have been included as co-authors.

This paper describes the development of an Early Stroke Specialist Vocational Rehabilitation intervention to support return to work following stroke and its delivery in the RETAKE trial. Iterative three stage, target population approach to intervention development and evaluation informed by the Medical Research Council Framework. Stage 1 (Initial codevelopment): interviews with key stakeholder service providers and users' and mapping of services supporting return to work after stroke to identify and explore barriers to and unmet needs for support; intervention codevelopment with experts and patient and public involvement (PPI). Stage 2 (Refinement): expert panel codevelopment workshops and systematic review to identify vocational rehabilitation intervention mechanisms of change in supporting return to work after stroke. Stage 3 (Testing): intervention piloting in two case studies, feasibility testing in a randomised controlled trial, acceptability interviews with stroke and employer participants. Further intervention refinement following delivery in the RETAKE randomised controlled trial. Stage 1: service mapping and 25 stakeholder interviews identified service gaps and unmet needs relating to early identification of employed stroke survivors, mild stroke, and hidden disabilities. Access to timely support relied on geographical proximity to a specialist hub and tacit knowledge of complex health, education and employment services and provider roles. Return to work issues reported by stroke survivors informed Early Stroke Specialist Vocational Rehabilitation prototype design objectives. Iterative developments following piloting included fatigue management, involvement of general practitioners, work simulation and liaison with other healthcare services. Interviews with 12 recipient stroke survivors and 6 employers identified additional features including occupational therapist negotiation skills, ability to respond to changing needs over time and patient empowerment to self-re-refer. The review corroborated intervention components and mechanisms and identified additional mechanisms, for example, peer support, supported self-management. Intervention mechanisms identified across the three stages were early intervention, understanding the impact of stroke on the person, their job and work environment, vocational goal setting, implementing workplace accommodations, individual tailoring, work preparation, colocation, case co-ordination, Multidisciplinary Team (MDT) working, employer engagement and education, and responsiveness, which involved monitoring work stability, providing feedback, and responding to changing needs over time and participant self-re-referral. In RETAKE, Early Stroke Specialist Vocational Rehabilitation was successfully delivered to 95.4% of allocated participants with 75.3% compliance. Intervention commenced a median 38 days (interquartile range 23-56, range 6-216) post stroke and continued for ≤ 12 months. Participants had a median seven intervention sessions (interquartile range 4-12, range 0-37), with discharge a median 10.3 months (interquartile range 5.5-12.0, range 0-15.4) post randomisation. Most intervention sessions were delivered via telerehabilitation (51.7%), in participants' homes (35.9%) or workplaces (6.4%). There was little difference between the number of sessions offered [mean 9.6 (standard deviation 7.46, range 0-39)] and attended [mean 9.0 (standard deviation 7.16), range 0-37]. However, occupational therapist contact with employers only occurred for 109 (36.8%) participants and employer visits occurred for 74 (25.0%). The Early Stroke Specialist Vocational Rehabilitation focus changed between the feasibility and definitive trial, with greater emphasis on current issues, fatigue management and informal psychological support, possibly due to the coronavirus disease discovered in 2019 pandemic. A programme theory and logic model illustrating the refined intervention and a description of Early Stroke Specialist Vocational Rehabilitation delivered in the RETAKE trial is reported. This comprehensive description of Early Stroke Specialist Vocational Rehabilitation will enable occupational therapists to implement Early Stroke Specialist Vocational Rehabilitation in practice and facilitative future evaluation. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 15/130/11.

Despite growing calls for patient and public involvement (PPI) to improve research relevance and inclusivity, it is still too often implemented in a tokenistic way. Health inequalities persist, and vulnerable populations, such as people with chronic conditions and/or limited health literacy (LHL), remain underrepresented as active participants in research. Factors contributing to this underrepresentation include complex research language, unfamiliar settings, and social stigma. To bridge the gap, this study aims to offer practical lessons that provide researchers and policymakers with concrete strategies for creating inclusive and effective research collaboration processes. A participatory action research approach was used, guided by the first three stages of the Participatory Research to Action (PR2A) framework: readiness, discover, and define. Data were collected across five group sessions with ten individuals with type 2 diabetes and various health literacy levels. The analysis focused on process-related data to explore recruitment, facilitation strategies, and participatory experiences. Effective recruitment relied on a multifaceted community outreach approach, combining online and offline channels, which improved group diversity. Clarifying expectations at the outset and balancing structure and flexibility supported meaningful contributions, and allowed sessions to be adapted to individual needs. This approach fostered factors central to motivation and group cohesion, including a collective purpose and mutual respect, while recognising the varied experiences of managing diabetes. Equitable engagement between citizen researchers and PPI facilitators was essential to valuing diverse perspectives and maintaining shared responsibility. Creative co-creation strategies, including sketching and small-group exercises, proved more effective in promoting accessible, inclusive engagement than text-based or plenary-only methods. The study demonstrates that recruiting and engaging citizens with type 2 diabetes and various health literacy levels as citizen researchers is feasible when conditions such as equitable partnership and engagement, clear expectations, and flexible structures are met. Creative co-creation strategies further support accessible and meaningful participation. These insights provide practical guidance for researchers seeking to implement inclusive PPI, contribute to reducing health inequalities, and inform the next stages of the PR2A framework for advancing participatory health research.

Collaboration between patients, healthcare professionals (HCPs), and researchers is essential to ensure that research and healthcare services meet end-users’ needs. However, patient and public involvement (PPI) in venous thromboembolism research remains limited. To explore and evaluate PPI in the development of a structured follow-up care model for patients with pulmonary embolism (PE). A prospective embedded case study was conducted within a Danish PE research project. Data was collected through observations, semi-structured interviews with patient representatives, HCPs, and researchers, and from written and visual materials. Analysis was guided by the UK standards for public involvement. Patients contributed at multiple levels across the research stages, from indirect representation through experience-based data generated via patient journey mapping to active co-production in workshops and sustained collaboration with a patient research partner (PRP). Key facilitators included sustained partnership, preparation for participation, and multiple modes of involvement. Identified barriers related to insufficient alignment of expectations, structural constraints in meeting formats, and the dominance of clinical language, which at times limited patient representatives’ ability to contribute on equal terms. Observational data confirmed that patient contributions were incorporated into the final model, particularly regarding psychosocial recovery, validation of persistent symptoms, and the development of patient-facing materials. PPI contributed substantively to the development of a structured post-PE care model aligned with patients’ needs and preferences. Early role clarification, sustained involvement across research stages, and attention to communication practices were central to facilitating meaningful PPI in the research process. When patients, healthcare professionals, and researchers work together, research and healthcare services are more likely to meet patients’ needs. In this study, we examined how patients could be involved in research about pulmonary embolism (PE). Until now, patients have rarely been included in this type of research. We explored patient engagement in a Danish research project aiming to co-produce a structured follow-up care model for patients with PE. Patient representatives were involved throughout the project, contributing to the definition of research questions, the design of the project, the co-production of the post-PE care model, and the dissemination of findings. One patient research partner was also part of the steering committee, influencing decision-making. Patients were involved in the research in different ways and at different stages. Sometimes their experiences were shared indirectly through information collected from patient journey mapping. Other times, they worked directly with researchers by taking part in workshops and through ongoing collaboration with a patient research partner (PRP). What helped their involvement was having a long-term partnership, making sure they were well prepared to take part, and offering different ways for them to contribute. However, there were also challenges. These included unclear expectations, meeting formats that were not always supportive, and the heavy use of medical language, which sometimes made it harder for patient representatives to contribute as equals. Despite these challenges, the benefits outweighed the barriers, and patient engagement proved to be highly valuable.

Insights from Patient and Public Involvement (PPI) in Economic Evaluations of Severe Mental Illness: Comparing Recovering Quality of Life (ReQoL) and the EQ-5D-5L.

Patient and public involvement in randomized trials of lifestyle intervention among pregnant women with obesity: An umbrella review.

Chronic respiratory diseases (CRDs), particularly asthma and chronic obstructive pulmonary disease (COPD), impose significant burdens on patients and their families in low- and middle-income countries (LMICs). Little is known about the experience of living with CRD in low- and middle-income countries (LMIC), and the impact of systemic inequities in primary care settings. To explore patient experiences of systemic inequities in CRD care in Klang District, Malaysia. We employed an adapted qualitative Photovoice study conducted between December 2023 and October 2024. The study involved adult patients with self-reported CRDs from five primary care clinics in Klang District, Malaysia. In-depth interviews were conducted at two time points using an interview guide and focused on the topics chosen by participants in their photographs. We transcribed audio-recordings verbatim, checked for accuracy and analysed them thematically. Patient and public involvement (PPI) was integral throughout the study, enhancing cultural relevance and ethical oversight. Fourteen participants (mean age 54 years; 57.1% men, 42.9% Malay, 50% diagnosed with asthma) completed the study. Four interconnected themes emerged: (1) indoor and outdoor air pollution (e.g. smoking and haze) worsened respiratory symptoms; (2) financial strain due to out-of-pocket expenses despite provision of universal healthcare; (3) occupational vulnerabilities, including transitions to precarious informal work due to health limitations; and (4) gendered caregiving burdens, including caring responsibilities while ill, pregnancy-related vulnerability, stigma, and household misunderstanding. Participants consistently showed resilience, proactively adopting coping strategies despite systemic barriers. This study highlights intersectional inequities faced by people with CRDs in Klang, Malaysia, emphasising environmental, financial, occupational, and gender-specific challenges. The use of participatory visual methodologies like Photovoice gives voice to people, allowing their narratives to advocate for culturally sensitive change to the lived environment supported by equitable provision of healthcare.

The European Society for Child and Adolescent Psychiatry (ESCAP) clinical guidance on transition supports care across the child and adolescent mental health service (CAMHS) and adult mental health service (AMHS) boundary throughout Europe. It outlines practices, procedures, and service environments to promote appropriate, safe and timely transition of young people from child and adolescent to adult mental health services or alternative care settings. The guidance addresses planning, decision-making and discharge management at CAMHS and, where needed, continuity in AMHS. The development of the guidance followed established methodological standards for clinical guidance production, combining evidence review, patient and public involvement (PPI), and expert consensus through a structured four-stage process. The guidance is presented in two parts: Part 1 covers six key domains of transition practice, while Part 2 targets service improvement. Intended primarily for clinicians and service managers and providers, the guidance also offers useful information for young people and their families. To enhance local relevance, countries should adapt recommendations to national service and policy contexts.

There are approximately 1.8 million people living with dementia in Germany, of whom many present with a wide range of symptoms and needs. The assessment of these symptoms is often challenging for nursing staff in long-term care settings. The dementia-specific version of the Integrated Palliative Outcome Scale (IPOS-Dem) can support this assessment by enabling the timely identification of the needs of people living with dementia. To facilitate the use of IPOS-Dem, a user-friendly manual is required. The aim of this study is therefore to develop information material for assessing palliative care needs among people living with dementia through an iterative and participatory process tailored to professional caregivers, and to explore the content requirements of these materials from the caregivers’ perspective. A multi-stage qualitative study involving a Patient and Public Involvement (PPI) group and a focus group with professionals was conducted. The manual was developed through an iterative and participatory process, which included revision based on input from the PPI group and the validation of the final version in a structured focus group discussion. The data was analyzed using Mayring’s qualitative content analysis. The PPI group consisted of three, the focus group of seven people (median age = 51 years; median work experience = 29 years). Feedback from the discussions encompassed themes that were incorporated into the revised version of the manual, including reducing continuous text, adding graphical elements to improve readability, revising the layout, and refining the case example to describe observable differences in a more concrete way. Linguistic revisions, such as simplifying and shortening phrasing, as well as making the manual more engaging and motivating, were also implemented. The manual was rated by the participating professionals as helpful and practice-oriented, supporting the systematic assessment of palliative care needs. The participatory and iterative development process ensured that the manual reflects the practical needs and perspectives of professional caregivers, thereby enhancing its relevance and acceptance in dementia care.

Patient and public involvement (PPI) is crucial for enhancing research quality and relevance and addressing health inequalities. PPI ensures that studies tackle relevant and meaningful questions, as there is a recognized need by the research community to document and share PPI studies to advance the field and encourage the adoption of such activities. The study aimed to provide a detailed report on the PPI activities undertaken to develop and implement a randomized controlled trial of a novel therapeutic tool designed to increase interoception and metacognition (ie, the Interoceptive Insight and Metacognitive Efficacy beliefs [InMe] trial). The InMe trial integrated insights from experts by experience, as well as from clinical and academic experts. This collaborative approach resulted in the development of a comprehensive trial across 4 main stages-design, delivery, results interpretation, and future planning. Here, we highlighted the unique insights and the added value in incorporating PPI activities into our trial development and implementation, while reporting challenges and shortcomings that were identified throughout this process. PPI activities within the InMe trial led to meaningful changes, while collaborators expressed satisfaction and increased interest in interoception research. Further improvements on how to best support experts by experience when sharing their experiences were also identified.

Recruiting participants into clinical trials is often challenging, particularly when trying to involve people from diverse or disadvantaged communities. This article describes how we co‑produced video resources to support inclusion in the LifeMap‑QUEST clinical study. LifeMap is a new approach to diagnosing people who may be at risk of Sudden Cardiac Death (SCD). Recognising the longstanding under‑representation of ethnic minority groups in research, and the barriers posed by language, literacy, and trust, the LifeMap‑QUEST Patient and Public Involvement (PPI) Advisory Group worked with community partners and clinicians to develop participant information videos in English, Gujarati, and Hindi. This article explains how this collaborative process unfolded. As part of our co‑production approach, we tested AI translation tools such as ChatGPT. However, the translations produced were too formal, used complex terminology, and did not capture the tone or cultural context needed. We therefore adopted a collaborative method with a local charity, South Asian Health Action (SAHA), using forward–back translation, validation by native speakers within the PPI Advisory Group, and review by cardiac consultants who spoke Gujarati and Hindi. This ensured both accuracy and cultural appropriateness. Filming used a simple “talking‑head” style to create a friendly, approachable tone. Members of the PPI Advisory Group reviewed the videos and offered constructive feedback. The article highlights the challenges of developing participant information in multiple languages, emphasising the need for PPI, community partners, and expert clinical oversight. We hope that by describing what we did and the lessons we learnt, it will support others to make participant information videos in different languages. This article explains how our Patient and Public Involvement (PPI) Advisory Group worked with researchers to create study information videos in English, Gujarati, and Hindi for a project called LifeMap‑QUEST. Written leaflets inviting people to take part in research can be long, confusing, and difficult to understand. This can be especially difficult for people who do not speak or read English well. In Leicester, where we are carrying out the study, many people speak a South Asian language better than English. To encourage South Asian people to take part in our study, our PPI Advisory Group suggested creating short videos in different languages. This article describes the journey of how we worked together, what we did, and why it matters. As a first step, we used modern technology called ChatGPT to turn our information into other languages but the language it produced was too technical and not easy for people to follow. Instead, we worked closely with our PPI Advisory Group, a community charity called South Asian Health Action (SAHA), and cardiologists who speak Gujarati and Hindi. Together, we checked the translations carefully to make sure the words were accurate, clear, and friendly. The videos were filmed in a warm and approachable style, with people speaking directly to the camera. We asked our PPI Advisory Group to review the videos, and they told us we needed clearer sound and better images to help viewers follow what was being explained. Their feedback helped us improve the final versions. We hope that by describing what we did and the lessons we learnt, it will support others to make videos in different languages.

Patient and public involvement (PPI) is increasingly a research priority encouraged by health research funders. It is difficult to know, however, how prevalent PPI is within research. The aim of this review was to gain a contemporary understanding of the frequency and types of PPI being reported in maternal and neonatal clinical trial reports, and if an increase in PPI reporting was evident over time. An exploratory review of maternal and neonatal trial reports published in nine healthcare journals between 2017 and 2022 was undertaken. A search was conducted for eligible trial reports in each journal using SCOPUS, in addition to a manual search of each journal's archive. Once an eligible trial report was identified, a search was conducted for the trial's associated protocol. Both trial documents were reviewed for any information on PPI activity. Descriptive statistics of the included trials' characteristics were produced. Three hundred and fifty-two trial reports, alongwith theassociated trial protocols for 170 trial reports,were identified and included in the analysis. Of these, 48 trials(14%) reported PPI, either within the main trial record (n = 40) or solely in the trial protocol (n = 8). Twenty (42%) of these trials were conducted in the UK. Thirty-six trials reported PPI contributors in trial design and planning,29 trials reported PPI during the running of the trial, and 20 trials involved contributors in trial analysis and dissemination. There was no sustained increase in PPI reporting over the included timeframe. There is minimal reporting of PPI in maternal and neonatal clinical trials, with wide variations in the depth of information provided. PPI reporting guidelines in academic journals may be beneficial in prompting researchers to provide PPI information and to raise awareness of the profile of PPI in maternal and neonatal trial research. The review was not registered.

Patient and public involvement (PPI) is increasingly embedded in stroke and aphasia participatory research, enhancing relevance and inclusivity. While the benefits of PPI are well-documented, the costs, both direct (eg, honoraria, travel, accessibility materials) and indirect (eg, time, administrative burden, emotional labour), remain poorly reported. This scoping review aims to (1) identify and categorise direct and indirect costs of PPI in stroke research, (2) examine how these costs are defined, reported or implied, (3) map cost-related barriers and facilitators and (4) expose evidence gaps to inform the Mapping the Economic and Social Tangible and Emotional Resources of Patient and Public Involvement (MASTER-PPI) framework. Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines, we will search Medline, PUBMED, Embase, CINAHL, APA PsycINFO, Scopus and Web of Science, as well as grey literature (NIHR INVOLVE, Horizon Europe, non-governmental organisation (NGO) reports). Eligible studies include those reporting or implying direct or indirect costs of PPI in stroke research. Two reviewers will independently screen and extract data, which will be synthesised descriptively and thematically. Findings will be aligned with the MASTER-PPI framework. Ethical approval is not required. The findings will be disseminated through peer-reviewed journal publications, conference presentations, social media posts in lay language and policy briefs tailored for NGOs and funders. This protocol is registered with the Open Science Framework (OSF) (https://doi.org/10.17605/OSF.IO/VM9ZU).