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INTRODUCTION: Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. METHODS: Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. FINDINGS: Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. CONCLUSIONS: While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

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This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

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INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

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RATIONALE: Masks have been widely used as a preventative tool during the COVID-19 pandemic. However, the use of masks by children has been controversial, with international guidelines recommending a risk-based approach to national policymakers. AIMS AND OBJECTIVES: We aimed to conduct a systematic review that explores children's experiences of mask-wearing, drawing on an evidence base that describes mask-wearing in different contexts including air pollution, and to prevent the spread of infectious disease. METHODS: We searched MEDLINE, Embase and PsycINFO in June 2021, with repeat searches in August 2022 and January 2024, for primary research studies exploring children's experiences of masks. Included studies reported on participants between 4 and 14 years (inclusive), with no restrictions on language where an English translation was available. Two reviewers independently screened titles and abstracts and reviewed full texts, with discrepancies resolved by a third reviewer. We used the Mixed Methods Appraisal Tool for quality appraisal and narrative synthesis to identify key findings. We also conducted stakeholder consultation (Patient and Public Involvement (PPI)) with nine children, where they submitted annotated drawings of their preferred masks to complement our review findings. RESULTS: We screened 982 titles and abstracts and reviewed 94 full texts. 45 studies were included in the synthesis. Children's experiences of mask-wearing were influenced by their perceived necessity, social norms around their use and parental attitudes. Challenges related to mask-wearing were described, including difficulty reading facial expressions and physical discomfort. Children found it easier to wear masks when sitting and in cooler environments, and they benefited from unmasking during outdoor break time at school. As part of the PPI consultation, children highlighted the importance of mask design and the environmental impact of masks. CONCLUSION: Children's experiences of mask-wearing were varied and context-dependent, with several mask-design challenges raised. Future policy on mask-wearing needs to consider the context in which mask-wearing would be most beneficial, and how local adaptations to policy can respond to children's needs.

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The involvement of patients and the public in research is now an expectation in research with funders requesting a clear plan of involvement and engagement. In the United Kingdom involvement typically focuses on research prioritisation, design and delivery, in contrast activities that share the results of research or research methods more generally are considered to be engagement. Clinical trials tend to concentrate on involvement activities with less emphasis on engagement. To promote engagement activities in the context of clinical trials we asked people attending the 2022 International Clinical Trials Methodology Conference to share ideas on how we can best engage with patients and the public. Responses were reviewed and 22 themes identified. One suggestion was to create an advent calendar and so these 22 themes plus two from the authors were used as a daily tweet from the 1st to the 24th December 2022. Here we share these ideas and draw comparisons between engagement activities in research and traditions of the Christmas period. The ideas shared are not intended as a definitive list but instead a novel way to start discussions between experts by experience, researchers, health professionals and communities to facilitate co-production of meaningful engagement strategies.

Patient and public involvement and engagement are terms used to describe specific activities that have a variety of goals from information giving through topublic co-production of research. Involvement and engagement are important as they can help reduce waste in research by ensuring that the research is relevant, conducted well and that the results are shared to those that will use them to make decisions about treatments, including patients. In the United Kingdom the term "engagement" usually refers to activities that focus mainly on information giving, for example sharing the results of research or information about how research is done in general. In this commentary we share ideas for engagement activities that were collected from people attending the International Clinical Trials Methodology Conference in 2022. One of the ideas shared was to have an advent calendar and we have used this to draw comparisons between traditions surrounding the Christmas period and engagement of patients and the public. We share 24 different ideas in the form of a printable advent calendar and invite the clinical trials community, including experts by experience, to reflect on these to generate more ideas for meaningful engagement activities so that everyone who will use the results of research has the opportunity to shape, share, and benefit from research.

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BACKGROUND: Citizen science is a way to democratise science by involving groups of citizens in the research process. Clinical guidelines are used to improve practice, but their implementation can be limited. Involving patients and the public can enhance guideline implementation, but there is uncertainty about the best approaches to achieve this. Citizen science is a potential way to involve patients and the public in improving clinical guideline implementation. We aimed to explore the application of citizen science methods to involve patients and the public in the dissemination and implementation of clinical guidelines in oral health and dentistry. METHODS: We developed GUIDE (GUideline Implementation in oral health and DEntistry), a citizen science online platform, using a participatory approach with researchers, oral health professionals, guideline developers and citizens. Recruitment was conducted exclusively online. The platform focused on prespecified challenges related to oral health assessment guidelines, and asked citizens to generate ideas, as well as vote and comment on other citizens' ideas to improve those challenges. Citizens also shared their views via surveys and two online synchronous group meetings. Data were collected on participant's demographics, platform engagement and experience of taking part. The most promising idea category was identified by an advisory group based on engagement, feasibility and relevance. We presented quantitative data using descriptive statistics and analysed qualitative data using inductive and deductive thematic analysis. RESULTS: The platform was open for 6 months and we recruited 189 citizens, from which over 90 citizens actively engaged with the platform. Most citizens were over 34 years (64%), female (58%) and had a university degree (50%). They generated 128 ideas, 146 comments and 248 votes. The challenge that led to most engagement was related to prevention and oral health self-care. To take this challenge forward, citizens generated a further 36 ideas to improve a pre-existing National Health Service oral care prevention leaflet. Citizens discussed motivations to take part in the platform (understanding, values, self-care), reasons to stay engaged (communication and feedback, outputs and impact, and relevance of topics discussed) and suggestions to improve future platforms. CONCLUSION: Citizen science is an effective approach to generate and prioritise ideas from a group of citizens to improve oral health and dental services. Prevention and oral health self-care were of particular interest to citizens. More research is needed to ensure recruitment of a diverse group of citizens and to improve retention in citizen science projects. PATIENT OR PUBLIC CONTRIBUTION: This project was inherently conducted with the input of public partners (citizen scientists) in all key aspects of its conduct and interpretation. In addition, two public partners were part of the research team and contributed to the design of the project, as well as key decisions related to its conduct, analysis, interpretation and dissemination and are co-authors of this manuscript.

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BACKGROUND: Artificial intelligence (AI) is widely considered to be the new technical advancement capable of a large-scale modernization of health care. Considering AI's potential impact on the clinician-patient relationship, health care provision, and health care systems more widely, patients and the wider public should be a part of the development, implementation, and embedding of AI applications in health care. Failing to establish patient and public engagement and involvement (PPIE) can limit AI's impact. OBJECTIVE: This study aims to (1) understand patients' and the public's perceived benefits and challenges for AI and (2) clarify how to best conduct PPIE in projects on translating AI into clinical practice, given public perceptions of AI. METHODS: We conducted this qualitative PPIE focus-group consultation in the United Kingdom. A total of 17 public collaborators representing 7 National Institute of Health and Care Research Applied Research Collaborations across England participated in 1 of 3 web-based semistructured focus group discussions. We explored public collaborators' understandings, experiences, and perceptions of AI applications in health care. Transcripts were coanalyzed iteratively with 2 public coauthors using thematic analysis. RESULTS: We identified 3 primary deductive themes with 7 corresponding inductive subthemes. Primary theme 1, advantages of implementing AI in health care, had 2 subthemes: system improvements and improve quality of patient care and shared decision-making. Primary theme 2, challenges of implementing AI in health care, had 3 subthemes: challenges with security, bias, and access; public misunderstanding of AI; and lack of human touch in care and decision-making. Primary theme 3, recommendations on PPIE for AI in health care, had 2 subthemes: experience, empowerment, and raising awareness; and acknowledging and supporting diversity in PPIE. CONCLUSIONS: Patients and the public can bring unique perspectives on the development, implementation, and embedding of AI in health care. Early PPIE is therefore crucial not only to safeguard patients but also to increase the chances of acceptance of AI by the public and the impact AI can make in terms of outcomes.

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BACKGROUND: Patient and public involvement in health economic evaluation is still relatively rare, compared to other areas of health and social care research. Developing stronger patient and public involvement in health economic evaluation will be important in the future because such evaluations can impact on the treatments and interventions that patients can access in routine care. MAIN TEXT: The Consolidated Health Economic Evaluation Reporting Standards (CHEERS) is a reporting guideline for authors publishing health economic evaluations. We established an international group of public contributors who were involved in the update of the CHEERS 2022 reporting guidance, ensuring two items (areas of reporting) specifically about public involvement were included. In this commentary we focus on the development of a guide to support public involvement in reporting, a key suggestion made by the CHEERS 2022 Public Reference Group, who advocated for greater public involvement in health economic evaluation. This need for this guide was identified during the development of CHEERS 2022 when it became apparent that the language of health economic evaluation is complex and not always accessible, creating challenges for meaningful public involvement in key deliberation and discussion. We took the first step to more meaningful dialogue by creating a guide that patient organisations could use to support their members to become more involved in discussions about health economic evaluations. CONCLUSIONS: CHEERS 2022 provides a new direction for health economic evaluation, encouraging researchers to undertake and report their public involvement to build the evidence base for practice and may provide some reassurance to the public that their voice has played a part in evidence development. The CHEERS 2022 guide for patient representatives and patient organisations aims to support that endeavour by enabling deliberative discussions among patient organisations and their members. We recognise it is only a first step and further discussion is needed about the best ways to involve public contributors in health economic evaluation.

BACKGROUND: Patient and public involvement in health economic evaluation is still relatively rare, compared to other areas of health and social care research. Developing stronger patient and public involvement in health economic evaluation will be important in the future because such evaluations can impact on the treatments and interventions that patients can access in routine care. MAIN TEXT: We established an international group of public contributors who were involved in the development of the CHEERS 2022 reporting guidance, ensuring two items (areas of reporting) specifically about patient and public involvement were included. In this commentary we focus on the development of a guide to support patient and public involvement in reporting, a key suggestion made by the CHEERS 2022 Public Reference Group, who advocated for greater public involvement in health economic evaluation. The need for this guide was identified during the development of CHEERS 2022 when it became apparent that the language of health economic evaluation is complex and not always accessible, creating challenges for meaningful public involvement in key deliberation and discussion. We took the first step to more meaningful dialogue by creating a guide that patient representatives and patient organisations could use as support to become more involved in discussions about health economic evaluations. CONCLUSIONS: CHEERS 2022 provides a new direction for health economic evaluation, encouraging researchers to undertake and report their public involvement in order to build the evidence base for practice. The CHEERS 2022 guide aims to support patient representatives and patient organisations to become more involved in discussions about health economic evaluations. We recognise it is only a first step and further discussion is needed about the best ways to involve public contributors in health economic evaluation.

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[This corrects the article DOI: 10.3389/fresc.2022.873216.].

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INTRODUCTION: Rapid qualitative studies conducted with patient and public involvement can help promote policy-relevant and efficient research. There is a need to understand the experiences of researchers, patients, and members of the public to guide the development of good practice and to determine the extent to which rapid qualitative research can be implemented in PPIE projects. METHODS: We conducted a qualitative study to explore the experiences of research teams that carried out studies using rapid techniques with patient and public involvement. We carried out 26 interviews with researchers, coordinators, patients, carers, service users and members of the public. RESULTS: This study identified needs which related to practical and time constraints. Rapid qualitative research tends to be limited to certain PPIE groups, and particular phases of the research process. Study findings are rarely discussed with PPIE members. The educational needs of rapid qualitative research were also identified. Researchers and PPIE members considered three main issues: a lack of training on patient involvement for researchers, rapid qualitative research training for PPIE members, and the diversity of PPIE members. CONCLUSION: We found that rapid researchers were able to involve patients and members of the public in research despite time pressures. The challenges identified in this study can be used to plan future training programmes for researchers and PPIE panel members and develop strategies to recruit PPIE panel members from a wide range of backgrounds. PUBLIC CONTRIBUTION: The research aim was to explore the experiences of those carrying out rapid qualitative studies with PPIE. As such, the participants of this study included patients, carers, service users and members of the public, who were interviewed individually. A lived experienced researcher and PPIE member for a hospital conducted the design, data collection and analysis of the study. The study brief was to interview researchers only. The lived-experience researcher initiated the inclusion of PPIE members as participants, therefore strengthening the study design. We shared the draft report with the PPIE participants for participant validation and to maintain a continuous feedback relationship. This led to addressing key issues in designing and involving PPIE members in more meaningful and equal ways. Whilst there is agreement on activities which centre on PPIE, there is no consensus on how to achieve these in high quality rapid qualitative studies.

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From a humanistic perspective, participatory processes in research find support on both ethical and moral grounds. In practical terms however, it is often difficult to establish protocols that best honour (i.e., elicit, capture, and integrate) the opinions of individuals and groups that represent the various specific stakeholders (e.g., from allied health, scientific, and academic disciplines) needed to investigate complex phenomena. Here, we describe a consultation process (funded by Parkinson's UK) devised to explore use of music among people with Parkinson's in relation to potential applications to enhance quality of life. People with Parkinson's were paired with researchers in order to discuss music on an equal footing so as to enable participant empowerment. We describe outcomes that demonstrate avenues of success as a result of this approach and additional insights gained through these processes in the hope of informing future practise. It has been our experience that researchers must establish a balance between (a) ensuring methodological rigour within an appropriate framework, and (b) facilitating informal "playtime" that develops connectivity between participants and enables both creative thinking and reflexive practise amongst stakeholders. We encourage researchers not to underestimate "playtime" as an important vehicle to foster this social interactivity and fuel the good will required to conduct inclusive and relevant research.

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BACKGROUND: Patient and Public Involvement (PPI) in research aims to improve the quality, relevance and appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence-based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects. METHODS: A scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfo and Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluation and (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects. RESULTS: Nine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited. CONCLUSION: Although currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers and PPI facilitators collaborated as co-authors on the conceptualization, execution and writing of this review, including refining the findings into the set of principles reported here.

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BACKGROUND: Smartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app. METHODS: Patients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure. RESULTS: Four PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users' hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released. CONCLUSIONS: This study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields.

Patient and public involvement (PPI) plays an important role in promoting effective execution of health science research, as well as in the establishment of a social agreement and infrastructure for the care of various diseases, including cancer, chronic diseases, and allergic illnesses. Hay fever is one of the most common allergic diseases, affecting more than 30 million people in Japan. It is known for its myriad factors and diverse presentations. Previously, we developed a mobile health (mHealth) smartphone application (app) for hay fever­AllerSearch­released in February 2018. This app is capable of collecting relevant digital phenotypes and user-provided information, which are used in providing tailored, evidence-based suggestions. To our knowledge, no other studies have been conducted on the implementation of PPI in mHealth. Since hay fever presents with a wide variety of symptoms and risk factors, PPI principles appear well-suited for eliciting insights from the patient/public population and for incorporating new, expert perspectives into the research process. In this study, we included PPI contributors in the research plan, app development, and evaluation. Most notably, the survey questionnaire and user interface of the app was tailored based on PPI feedback. The updated AllerSearch app was released during this study period. Since hay fever is a widespread and variable illness, the multifaceted input from patients and public experts enabled by PPI implementation holds promise for improving society-wide healthcare and in empowering a culture toward medical involvement.

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BACKGROUND: The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and reflections on the importance of engagement from the first year of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group and cross-cutting program. EPLED was created to support persons with dementia and care partners to be actively involved in the CCNA research process. MAIN BODY: The Advisory Group was formed to work with CCNA researchers and programs to develop new ways to further collaborate and advance the methods of patient engagement in research on dementia. A role profile and recruitment poster were developed and, after interviews, 17 people were invited to join the Advisory Group. We planned three online EPLED meetings to take place between July-August of 2020, with one in-person meeting to be held in Canada. Due to COVID-19, we moved all of these meetings online. In the first year, EPLED and the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. For researchers and people with lived experience of dementia, motivations for patient engagement included challenging stigma, making meaning from their experience (such as building relationships and having their voices heard) and contributing to research. Common challenges to engagement were related to navigating the impact of COVID-19, such as difficulty in getting to know each other and technical issues with video-conference software. We learned that developing trusting relationships, providing education, offering support, being flexible and acknowledging tensions between research, practice and lived experience, were vital to the success of the Advisory Group. CONCLUSION: The first year of the EPLED Advisory Group demonstrated the potential contributions of people with lived experience of dementia as partners in research. Building these collaborations with individuals and communities-people living with dementia, care partners, researchers and research institutions-has the potential for positive impact across these groups and, ultimately, improve the lives of people living with dementia and their care partners.

In this paper, we describe the development of the Canadian Consortium of Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and the first year of the EPLED Advisory Group. EPLED was created to build opportunities for patient engagement in the CCNA's research on dementia. People living with dementia and current/former friends, family and care partners were recruited from across Canada to join the Advisory Group. In the first year, the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. Challenges included the impacts of the COVID-19 pandemic, online meetings, and differing expectations and priorities. Lessons learned and reflections on the importance of engagement are discussed in the context of research on dementia and from the perspectives of researchers and Advisory Group members.

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BACKGROUND: In the UK approximately a quarter of the population experience infectious intestinal disease (IID) each year. However, only 2% present to primary care, preventing a true determination of community burden and pathogen aetiology. The aim of this pilot study was to gauge public acceptability of a technology-mediated platform for reporting episodes of IID and for providing stool samples. METHODS: This study employed a cross-sectional online survey design, targeting individuals 16 + years old within Liverpool City Region, UK. Information sought included demographics, comfortability of reporting illness and IID symptoms, willingness to provide stool, and favoured stool-provision method. Univariable logistic regression was used to examine associations between demographic variables and providing a stool sample. Odds ratios (OR) and associated 95% confidence intervals (CIs) were produced. RESULTS: A total of 174 eligible participants completed the survey, with 69% female. The sample was skewed towards younger populations, with 2.9% aged 65 + years. Nearly a third (29%) had a household income of less than £30,000 per annum and 70% had attained a degree or higher. The majority identified as White British (81%) and 11% identified as ethnicities typically grouped Black, Asian and minority ethnic (BAME). Three quarters of participants were either 'Comfortable' or 'Very Comfortable' with reporting illness (75%) and with answering symptom-related questions (79%); 78% reported that they would provide a stool sample. Upon univariable analysis, increasing age - being 55 + (OR 6.28, 95% CI 1.15-117.48), and lower income (OR 2.5, 95% CI 1.02-6.60), was associated with willingness to provide a stool sample. Additionally, respondents identifying as BAME ethnicities and men may be less inclined to provide a stool sample. CONCLUSIONS: This pilot study assessed the acceptability of technology-mediated platforms for reporting IID and provision of stool samples in the community. Respondents were biased towards younger, technologically inclined, more affluent and educated populations. Acceptability for reporting illness and providing a stool sample through technology-mediated platforms was high. While older populations were under-represented, they were more likely to agree to provide a stool sample. Qualitative research is required to better reach older and more deprived populations, and to understand potential age, gender and ethnic differences in compliance with stool sampling.

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BACKGROUND: Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. METHODS: We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. RESULTS: Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. CONCLUSIONS: Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue.

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BACKGROUND: ReIMAGINE aims to improve the current prostate specific antigen (PSA)/biopsy risk stratification for prostate cancer (PCa) and develop a new image-based method (with biomarkers) for diagnosing high/low risk PCa in men. ReIMAGINE's varied patient and public involvement (PPI) and engagement (PE) strategy maximises the impact of its scientific output by informing and shaping the different stages of research. AIMS: Through including the voice of patients and the public, the ReIMAGINE Consortium aims to translate these different perspectives into the design and implementation process. This will improve the overall quality of the research by: reflecting the needs and priorities of patients and the public, ensuring methods and procedures are feasible and appropriate ensuring information is relevant and accessible to those being recruited to the study identifying dissemination channels relevant to patients/the public and developing outputs that are accessible to a lay audience With support from our patient/user groups, the ReIMAGINE Consortium aims to improve our ability to derive prognostic information and allocate men to the most appropriate and effective therapies, using a novel image-based risk stratification with investigation of non-imaging biomarkers. FINDINGS: We have been working with patients and the public from initiation of the project to ensure that the research is relevant to men and their families. Our PPI Sub-Committee, led by a PCa patient, has been involved in our dissemination strategy, outreach activities, and study design recommendations. For example, the sub-committee have developed a variety of informative videos relevant and accessible to those being recruited, and organised multiple online research engagement events that are accessible to a lay audience. As quoted by one of the study participants, "the more we present the benefits and opportunities to patients and the public, the more research commitment we obtain, and the sooner critical clinical questions such as PCa diagnostics will be addressed".

One in eight men will be diagnosed with prostate cancer (PCa). Most will not die of it, but our ability to identify those men whose cancer poses the greatest threat to life has, thus far, been poor. Some men are diagnosed with small cancers which will never cause them a problem, some will have treatment which is unnecessary, others will have their cancers missed, and others will be misclassified as either having low risk cancer and will therefore miss out on the appropriate treatment, or told their cancer is high risk and have unnecessary treatment. Nowhere else in modern medicine are these errors of over-diagnosis, over-treatment, missed-diagnoses, and poor risk-stratification more common. The ReIMAGINE Consortium has been developed to undertake discoveries that will correct these four key errors in the PCa diagnostic pathway. We will investigate how to best identify which men have, or will develop, aggressive prostate cancer using imaging combined with advanced biomarker analyses of blood and urine (i.e., OMICs technologies such as whole genome sequencing, targeted sequencing (e.g.: = , methylation). We will achieve this by building on established partnerships between patients, advocacy organisations, clinicians, imaging experts, molecular biologists, methodologists, and a broad range of industrial partners.The Patient and Public Involvement (PPI) sub-committee is an integral part of the study workflow, contributing to study design and recruitment, results analysis, and dissemination. The committee, led by a funded PPI co-ordinator and a patient chair, have given invaluable insight into the study modifications due to COVID-19 restrictions.

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Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing 'basic', 'fundamental', 'translational' or 'lab-based' research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.