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Background: We evaluated studies published in high-impact psychiatry journals to assess (1) the proportion that reported in articles whether they engaged people with lived experience; (2) the proportion that likely engaged people with lived experience; and, if engagement occurred, (3) stages of research (planning, conduct, interpretation, dissemination); and (4) engagement level (consult, involve, partner). Methods: We searched PubMed on December 14, 2022, for articles in psychiatry journals with impact factor ≥ 10 and reviewed articles in reverse chronological order until 141 were included, based on pre-study precision estimation. We contacted authors to obtain information on engagement. Results: Three of 141 (2%) studies reported engagement of people with lived experience in articles. Of the other 138 studies, 74 authors responded to follow-up emails and 22 reported they engaged people with lived experience but did not report in the article. Depending on assumptions about engagement by non-responders, we estimated, overall, 18-31% of studies may have engaged people with lived experience. Engagement occurred in research planning (70%) and rarely interpretation (35%). Most involved consultation (providing opinions or perspectives, 53%) and few involved partnership (11%). Conclusions: Engagement of people with lived experience in psychiatry research is uncommon, and when it does occur people are typically consulted but not engaged in roles with influence on decision-making. Funding agencies, ethics committees, journals, and academic institutions should take steps to support engagement of people with lived experience in psychiatry research. Plain English summary: Engaging people with lived experience in research is important to ensure research is relevant to people's needs. We do not know, however, how often people with lived experience are engaged in psychiatry research and whether engagement is reported in journal articles. We evaluated studies published in top psychiatry journals and assessed the (1) percentage that reported in the articles whether they engaged people with lived experience and (2) percentage that likely engaged people with lived experience based on author queries. Additionally, if people with lived experience were engaged in the studies, we also evaluated (3) the stages of research that people with lived experience were involved in (planning, conduct, interpretation, dissemination); and (4) their level of influence on decision-making (consult, involve, partner). Articles published in psychiatry journals with impact factor greater than or equal to 10 were eligible. We searched for studies on PubMed, a popular database of medical research, and reviewed articles from most to least recent until 141 were included. We calculated that we needed to review 141 articles to have enough to make reasonably precise estimates (confidence intervals around estimates of 10% or less) of how many studies engaged people with lived experience. We found that 3 of 141 (2%) studies reported on engagement in articles. We contacted authors of studies that did not report on engagement in their articles and asked whether they engaged people with lived experience. Of the 138 articles that did not report on engagement, 74 authors responded to email queries, and 22 reported they engaged people with lived experience. We estimated, overall, 18-31% of studies may have engaged people with lived experience, depending on whether we assumed that non-responders did or did not engage. Among all studies that engaged people with lived experience, both those reported and unreported in the articles, engagement commonly occurred in research planning (N = 14 of 20 studies, 70%) but rarely in the interpretation of results (N = 7 of 20 studies, 35%). Engagement mostly involved consultation, where people with lived experience provided perspectives to researchers (N = 10 of 19 studies, 53%). Few involved partnership, where they worked with researchers to make decisions (N = 2 of 19 studies, 11%). Funding agencies, ethics committees, academic journals, and universities should take steps to support engagement of people with lived experience in psychiatry research. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) in clinical trials is increasingly recognized as vital for ensuring research relevance and accessibility. Despite its proven benefits, PPIE remains limited, particularly in low- and middle-income countries, and more examples of effective strategies for involvement are needed. This commentary outlines the establishment of a PPIE group for clinical trials in a lower-middle-income country setting with limited research infrastructure. Main Body: We established Pakistan's first ever PPIE group for clinical trials within a new clinical trials unit at Ziauddin University in Karachi. The objectives of our project were focused on group formation, redesign of informed consent documents for trials, and dissemination of trial results to the public. Recruitment strategies involved referrals from clinicians and existing collaborators as well as engagement at public events, distribution of advertising leaflets and social media posts. Ten potential members were selected based on motivation, commitment and ability to contribute critically, with six members continuing their involvement long-term. An existing tool designed to establish the access needs of public partners was adapted to our project to help us document and account for members' expectations and support requirements. The process of using the tool enabled deep engagement, clarified roles, and fostered trust between coordinators and group members. Patient and public members gained confidence about the legitimacy of the project and felt more comfortable participating in the first group meeting. Lessons learned emphasize the importance of wide-ranging engagement efforts and transparent discussions about expectations to build effective collaborative relationships. Conclusion: Our experience demonstrates the feasibility of establishing a PPIE group for clinical trials in Pakistan and highlights strong public interest for research involvement. The use of a formal tool to document needs, prior experiences and expectations encouraged relationship-building and helped coordinators make relevant accommodations for members. This account contributes to the growing body of literature on effective PPIE practices, emphasizing the value of tailored support and transparent communication in facilitating meaningful public involvement in clinical trials. Plain English summary: Working together with patients and members of the public has the potential of making clinical trials better, more person-centered and relevant. Unfortunately, partnerships between trial researchers and the public are still uncommon. It is not known what the best ways are to involve the public in clinical trials, especially when it comes to non-Western populations. We set up the first-ever patient and public involvement and engagement group to support clinical trials in Pakistan. In this commentary, we share our initial experiences of successfully establishing the group and the two main lessons we learned. Ten group members were identified by widely advertising our project to doctors, community organizations, patients and their carers at our hospital. Before the first group meeting, two coordinators met with each potential member to discuss and document their interests, expectations and needs. Both researchers and group members felt that these discussions were a good use of their time and helped make the project a success. The first main lesson learned from our experience was that enough time, funding, staff and resources are needed to identify members and build meaningful collaborative partnerships. The second main lesson learned was that honest discussions are needed at the very beginning of a collaboration about expectations. Our experience shows that involving patients and members of the public in clinical trials in Pakistan is possible and we hope it inspires and helps other researchers in their patient and public engagement efforts. [ABSTRACT FROM AUTHOR]

This study develops an integrated methodology to incorporate public perspectives into the establishment and development of public transportation infrastructure systems. The approach involves surveying citizens to collect data, performing demographic analyses to identify differences between cities, and applying Multi-Criteria Decision-Making (MCDM) techniques to weight, scale, and integrate evaluation criteria in order to determine the optimal transportation option. The primary aim of this research is to incorporate public perspectives into transportation planning in developing countries and to promote stakeholder engagement for transportation initiatives in cities such as Baghdad, Iraq, and Tehran, Iran. First, an initial survey was conducted to identify the top three preferred criteria among 200 participants from both cities. The survey results revealed that the three most important criteria were safety, travel time, and reliability. Subsequently, a larger survey utilizing the Saaty scale was administered to capture citizens' preferences, with a total sample size of 550 from Baghdad and 345 from Tehran. The weights of the criteria were then calculated using the Group Analytical Hierarchy Process (GAHP). Three transportation alternatives—monorail, Light Rapid Transit (LRT), and metrobus—were suggested by transportation experts to be evaluated and ranked using the Technique for Order Preference by Similarity to Ideal Solution (TOPSIS) based on the weighted citizen preferences. The results indicate that for Baghdad residents, transportation safety is the most important priority, followed by reliability and travel time. However, LRT is rated as the most optimal transportation solution (0.721), followed by monorail (0.596) and metrobus (0.078). In Tehran, travel time represents the most preferred transportation attribute, followed by reliability and safety. The residents of Tehran are shown to prefer LRT (0.843), followed by monorail (0.370) and metrobus (0.143). Despite the similar ranking of transportation alternatives in the two cities, the performance scores differ between them, highlighting the importance of tailoring transportation planning to the unique preferences and needs of local communities. The validation of the results was conducted through sensitivity analysis to determine how variations in the criteria weights and input parameters affected the final rankings. Additionally, a stated preference survey was employed as a practical method to evaluate the robustness of the final ranking of the alternatives. [ABSTRACT FROM AUTHOR]

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Abstract Background We evaluated studies published in high-impact psychiatry journals to assess (1) the proportion that reported in articles whether they engaged people with lived experience; (2) the proportion that likely engaged people with lived experience; and, if engagement occurred, (3) stages of research (planning, conduct, interpretation, dissemination); and (4) engagement level (consult, involve, partner). Methods We searched PubMed on December 14, 2022, for articles in psychiatry journals with impact factor ≥ 10 and reviewed articles in reverse chronological order until 141 were included, based on pre-study precision estimation. We contacted authors to obtain information on engagement. Results Three of 141 (2%) studies reported engagement of people with lived experience in articles. Of the other 138 studies, 74 authors responded to follow-up emails and 22 reported they engaged people with lived experience but did not report in the article. Depending on assumptions about engagement by non-responders, we estimated, overall, 18-31% of studies may have engaged people with lived experience. Engagement occurred in research planning (70%) and rarely interpretation (35%). Most involved consultation (providing opinions or perspectives, 53%) and few involved partnership (11%). Conclusions Engagement of people with lived experience in psychiatry research is uncommon, and when it does occur people are typically consulted but not engaged in roles with influence on decision-making. Funding agencies, ethics committees, journals, and academic institutions should take steps to support engagement of people with lived experience in psychiatry research.

Abstract Background Patient and public involvement and engagement (PPIE) in clinical trials is increasingly recognized as vital for ensuring research relevance and accessibility. Despite its proven benefits, PPIE remains limited, particularly in low- and middle-income countries, and more examples of effective strategies for involvement are needed. This commentary outlines the establishment of a PPIE group for clinical trials in a lower-middle-income country setting with limited research infrastructure. Main Body We established Pakistan’s first ever PPIE group for clinical trials within a new clinical trials unit at Ziauddin University in Karachi. The objectives of our project were focused on group formation, redesign of informed consent documents for trials, and dissemination of trial results to the public. Recruitment strategies involved referrals from clinicians and existing collaborators as well as engagement at public events, distribution of advertising leaflets and social media posts. Ten potential members were selected based on motivation, commitment and ability to contribute critically, with six members continuing their involvement long-term. An existing tool designed to establish the access needs of public partners was adapted to our project to help us document and account for members’ expectations and support requirements. The process of using the tool enabled deep engagement, clarified roles, and fostered trust between coordinators and group members. Patient and public members gained confidence about the legitimacy of the project and felt more comfortable participating in the first group meeting. Lessons learned emphasize the importance of wide-ranging engagement efforts and transparent discussions about expectations to build effective collaborative relationships. Conclusion Our experience demonstrates the feasibility of establishing a PPIE group for clinical trials in Pakistan and highlights strong public interest for research involvement. The use of a formal tool to document needs, prior experiences and expectations encouraged relationship-building and helped coordinators make relevant accommodations for members. This account contributes to the growing body of literature on effective PPIE practices, emphasizing the value of tailored support and transparent communication in facilitating meaningful public involvement in clinical trials.

There is a need for better evidence on how to effectively support consumer partnerships in research (CPR). This paper aims to provide a practical checklist for market researchers to plan, implement, and report research where vulnerable consumers are the target population. A vulnerable consumer is someone who, due to their circumstances, may be disadvantaged or at risk in some marketplace situations. Here, it is proposed that research conducted about vulnerable consumers must include consumer co-researchers as partners in the research process. The involvement of consumers as co-researchers addresses this methodological gap to some extent by democratizing research design and empowering vulnerable consumers. The CPR Checklist is based on an integrative realistic review method, content validation via an expert panel, and includes consumer co-researcher involvement in the research process. Considering the complexities of vulnerable consumers and market research, the CPR Checklist provides a suite of 'how and why' questions to guide rigorous and ethical project conduct. [ABSTRACT FROM AUTHOR]

Abstract Background The Dance and Health project aimed to promote public involvement in health research. Public involvement leads worked with project partner community groups, Aakash Odedra Dance Company and Moving Together, to develop a community engagement project with people living in low-socioeconomic areas/deprivation and diverse ethnic minority groups. Dance and Health included a weekly 60-min dance class and 30 min of facilitated health science discussion, that could either be a public involvement discussion for a research project, an activity about a particular biomedical research theme or ongoing discussions with a visiting researcher. The goal of this paper is to explore the impact of the Dance and Health project on the social capital of participants and provide key learnings on how to engage and build partnerships with people from underserved groups in health research contexts. Methods Qualitative interviews and focus groups were completed which explored participant and dance tutor experiences in community venues. Participants were aged between 22 and 90, most were female and were from Asian ethnic minority groups and White British groups living in deprived neighbourhoods in Leicester. Qualitative data were analysed using qualitative content analysis. Results The responses to the Dance and Health project were positive across all the focus groups. Central themes identified were Feedback on the Project, Motivation to Exercise, Criticism of the NHS, Mental Wellbeing, Engagement in a Post Pandemic New Normal, Accessibility and Inclusivity, Empowerment and Building Social Capital. Discussion The focus groups evidenced that the project had broad impact. Participants expressed empowerment and ownership and described a range of social capital enrichment generated through the project including networks and friendships, access to the institutional resource of health science, and the opportunity to engage with a health and leisure activity that was valued and meaningful.

Abstract Background Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorganized and eliminated INVOLVE, an internationally recognised group that had played a central role in public involvement in the UK since 1996. Its remit was subsumed within a new center tasked with public involvement, participant recruitment, and evidence dissemination. A year later, in 2021, interested parties came together to discuss the evolution of INVOLVE and consider how to retain some of the important historical details and learn lessons from its long and important tenure. Methods We hosted a witness seminar in 2022 that was one of four work groups and brought together public involvement leaders that had been part of the conception, development, and evolution of INVOLVE between 1995 and 2020. Witness seminars are a method used to capture the complexity and nuance of historical events or initiatives. They support critical thinking and reflection rather than simple commemoration. We identified those who had played a role in INVOLVE history, ensuring diversity of perspective, and invited them to attend and speak at the seminar. This took place during two sessions where witnesses provided their recollections and participated in a facilitated discussion. Results Across the two online sessions, 29 witnesses attended and contributed thoughts and recollections. Two authors (SS, MP) identified six themes that were described in the witness seminar report and have been discussed, elaborated, and illustrated with witness quotations. These are: the importance of historical perspective; INVOLVE as a social movement; how INVOLVE worked (e.g. its hospitality, kindness, and inclusivity); INVOLVE as a quiet disruptor; public involvement evidence, knowledge, and learning; the infrastructure, processes, and systems developed by INVOLVE; and the demise and loss of INVOLVE as an internationally recognized center of excellence. Discussion The authors of this commentary reflected on the discussions that took place during the witness seminar and the themes that emerged, and share six broad learnings for future practice; (1) it is important to create and nurture public involvement communities of practice; (2) collaborative ways of working support open discussion amongst diverse groups; (3) be aware of the tensions between activism and being part of the establishment; (4) continued efforts should be made to build an evidence base for public involvement practice; (5) there are both benefits and drawbacks to having a centralized organization leading public involvement; and (6) support for public involvement in research requires a fit-for-purpose tendering process that embeds robust public involvement.

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy‐making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy‐making for older adults. Methods: A systematic search of peer‐reviewed and grey literature (English only) describing public engagement initiatives in health policy‐making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy‐making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation‐type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion: This review describes how public engagement practices have been conducted to help inform health policy‐making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults. [ABSTRACT FROM AUTHOR]

Introduction: There is growing scientific and policy recognition that optimising health before a potential pregnancy (preconception health) improves reproductive outcomes and the lifelong health of future children. However, public awareness on this topic is low. We conducted a public consultation to develop language recommendations and identify and prioritise approaches to inform research and improve public awareness of preconception health. Methods: A public consultation was undertaken with people of any gender aged 18–50 years living in the United Kingdom who were not currently expecting a child. Public contributors were recruited through patient and public involvement, community and support groups, an existing cohort study, and an LGBTQ+ charity. An initial round of online group discussions (February/March 2021) explored public contributors' knowledge of preconception health, their recommendations for appropriate language, and ideas about public health approaches. In a subsequent discussion round (May 2021), language recommendations were refined and suggested approaches prioritised. Discussions were summarised based on notes taken by two researchers. Results: Fifty‐four people joined the initial discussion round (66% women, 21% men, 13% nonbinary or transgender; 55% aged 18–30 years, 30% 31–40 years, 15% 41–50 years). Of these, 36 people (67%) participated in the subsequent round. Very few had heard the term 'preconception health', understood what it means, or why and for whom it is important. They recommended avoiding unfamiliar terms without further explanation (e.g., preconception health, medical terms), using language that is positive, encouraging and gender‐sensitive where possible, and using messages that are specific, nonjudgmental and realistic. The phrases 'health and well‐being during the childbearing years', 'health and well‐being before pregnancy and parenthood' and 'planning for parenthood' resonated with most public contributors. School‐based education, social media campaigns and the National Health Service emerged as priority approaches/settings for raising awareness. Conclusion: This public consultation produced recommendations from a diverse group of people of reproductive age in the United Kingdom to improve language and prioritise approaches that increase public understanding of preconception health in ways that are relevant and appropriate to them. This should begin in schools and will require adaptation of curricula, alongside co‐development of public awareness campaigns and guidance for healthcare professionals. Patient or Public Contribution: This public consultation included a diverse group of members of the public. They were not involved in the original design of the project, but following the initial round of online group discussions, they contributed to the interpretation and refinement of the emerging concepts in a subsequent round of group meetings. After the consultation activity, public contributors formed a Public Advisory Group and have subsequently been involved in other studies on the same topic. Two public contributors (E.R. and F.F.) provided critical input in the preparation and revision of this manuscript and are co‐authors of the paper. [ABSTRACT FROM AUTHOR]

Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Introduction: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion: Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review. [ABSTRACT FROM AUTHOR]

Background: The Dance and Health project aimed to promote public involvement in health research. Public involvement leads worked with project partner community groups, Aakash Odedra Dance Company and Moving Together, to develop a community engagement project with people living in low-socioeconomic areas/deprivation and diverse ethnic minority groups. Dance and Health included a weekly 60-min dance class and 30 min of facilitated health science discussion, that could either be a public involvement discussion for a research project, an activity about a particular biomedical research theme or ongoing discussions with a visiting researcher. The goal of this paper is to explore the impact of the Dance and Health project on the social capital of participants and provide key learnings on how to engage and build partnerships with people from underserved groups in health research contexts. Methods: Qualitative interviews and focus groups were completed which explored participant and dance tutor experiences in community venues. Participants were aged between 22 and 90, most were female and were from Asian ethnic minority groups and White British groups living in deprived neighbourhoods in Leicester. Qualitative data were analysed using qualitative content analysis. Results: The responses to the Dance and Health project were positive across all the focus groups. Central themes identified were Feedback on the Project, Motivation to Exercise, Criticism of the NHS, Mental Wellbeing, Engagement in a Post Pandemic New Normal, Accessibility and Inclusivity, Empowerment and Building Social Capital. Discussion: The focus groups evidenced that the project had broad impact. Participants expressed empowerment and ownership and described a range of social capital enrichment generated through the project including networks and friendships, access to the institutional resource of health science, and the opportunity to engage with a health and leisure activity that was valued and meaningful. Plain English Summary: A research team worked with community dance schools in Leicester to try to get more people from the Asian community and from poorer neighbourhoods involved in research and science. By taking part in the project, people benefitted from an opportunity to exercise and to learn about and influence health research taking place locally. However, the researchers also noticed that there were other benefits to the project. Dancing and learning about health science helped people bond and form new friendships. The researchers joined in, and this helped build friendships and trust between participants and people working in science and research. This is called bridging which is where we bring people together from different groups. The dance sessions made the researchers more approachable and less intimidating, so it was easier to trust them and build friendships. Bridging and bonding are ways of building social capital. Social capital describes the social resources that people can access in their neighbourhoods and communities e.g. facilities (village halls or clubs) and support networks. Researchers delivered focus groups in which participants talked about Feedback on the Project, Motivation to Exercise, Criticism of the NHS, Mental Wellbeing, Engagement in a Post Pandemic New Normal, Accessibility and Inclusivity, Empowerment and Social Capital. This supported the idea that projects where we try to engage with communities can build social capital. This is most likely when projects provide safety and accessibility, (1) and flexibility, a sense of belonging, commitment, communication, being genuine, relevance, sustainability (4). [ABSTRACT FROM AUTHOR]

Background: The methodologies for clinical research trials are evolving to greater usage of social media platforms, providing opportunities to incorporate smart technologies in their delivery. Research Nurses should consider how they can utilise platforms for public engagement in trials. Aim: To explore the experiences of social media platforms and clinical research trials in a healthy population group, to gain insight into how clinical researchers can utilise these platforms professionally and ethically. Methods: Using a critical realist qualitative focus group design with template analysis, we recruited 16 healthy members of the public aged 18–75 years. The data expands upon their thoughts and behaviours regarding social media platforms with their understanding of clinical research. Results: Three main themes along with their specific subthemes (1) Design: Patient and Public Involvement (Subtheme: Understanding of clinical research, Diversity of social media users), (2) Implementation: Recruitment to active studies, (Subtheme: Motivators for volunteering, Trustworthy), (3) Dissemination: Impact and Awareness of Results, (Subtheme: Information overload, Motivations for users to share information). Conclusions: This study has highlighted the need to consider the way different population groups use social media platforms and the information they share when looking to engage them in clinical research trials. [ABSTRACT FROM AUTHOR]

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children's lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives. [ABSTRACT FROM AUTHOR]

Background: Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorganized and eliminated INVOLVE, an internationally recognised group that had played a central role in public involvement in the UK since 1996. Its remit was subsumed within a new center tasked with public involvement, participant recruitment, and evidence dissemination. A year later, in 2021, interested parties came together to discuss the evolution of INVOLVE and consider how to retain some of the important historical details and learn lessons from its long and important tenure. Methods: We hosted a witness seminar in 2022 that was one of four work groups and brought together public involvement leaders that had been part of the conception, development, and evolution of INVOLVE between 1995 and 2020. Witness seminars are a method used to capture the complexity and nuance of historical events or initiatives. They support critical thinking and reflection rather than simple commemoration. We identified those who had played a role in INVOLVE history, ensuring diversity of perspective, and invited them to attend and speak at the seminar. This took place during two sessions where witnesses provided their recollections and participated in a facilitated discussion. Results: Across the two online sessions, 29 witnesses attended and contributed thoughts and recollections. Two authors (SS, MP) identified six themes that were described in the witness seminar report and have been discussed, elaborated, and illustrated with witness quotations. These are: the importance of historical perspective; INVOLVE as a social movement; how INVOLVE worked (e.g. its hospitality, kindness, and inclusivity); INVOLVE as a quiet disruptor; public involvement evidence, knowledge, and learning; the infrastructure, processes, and systems developed by INVOLVE; and the demise and loss of INVOLVE as an internationally recognized center of excellence. Discussion: The authors of this commentary reflected on the discussions that took place during the witness seminar and the themes that emerged, and share six broad learnings for future practice; (1) it is important to create and nurture public involvement communities of practice; (2) collaborative ways of working support open discussion amongst diverse groups; (3) be aware of the tensions between activism and being part of the establishment; (4) continued efforts should be made to build an evidence base for public involvement practice; (5) there are both benefits and drawbacks to having a centralized organization leading public involvement; and (6) support for public involvement in research requires a fit-for-purpose tendering process that embeds robust public involvement. Background: Involving members of the public in research can improve the way that research is planned, managed, and shared. Between 1996 and 2020 an organization in the UK called INVOLVE had an important role in public involvement in research. When INVOLVE lost this role, some people who had been part of the group got together to think about how to save some of the important information and learn lessons from the time it had existed. Methods: A meeting was arranged where people who have been part of an event or topic get together to share what it was like for them. This was called a witness seminar and it took place online over two days in 2022. Twenty-nine people attended and spoke about their experiences. Results: The people who attended the witness seminar had different ideas about why INVOLVE was important and agree that it is now missed. People talked about INVOLVE as part of a certain time in history and said it was a social movement. They felt that it was kind and caring, brought together lots of people with different ideas, and supported changes in thinking. INVOLVE had a focus on evidence and learning and created structure and systems to support public involvement in research. Losing INVOLVE was difficult because a lot of people within the UK and beyond looked to them as a leader in public involvement. We share quotes on all of these topics. Discussion: In this article we looked at how people remembered INVOLVE and thought about what information could be saved. We share lessons that will support thinking about the future of public involvement. These include things like how important it is for there to be spaces for people to come together to learn, discuss, and share, and that we have more work to do to understand public involvement and fully include it in research. [ABSTRACT FROM AUTHOR]

Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]

Background: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. Methods: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. Results: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1—preference for the biopsychosocial model, 1.2—'Reviewing' instead of mapping survey questions and 1.3—comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1—connecting preparation and operation, 2.2—inclusivity and adjustments in activities and 2.3—feedback for improving activities and (3) real‐world applications—targeted awareness raising, subthemes: 3.1—who, where, what and how to share activity findings and results, 3.2—sharing with human resource and equality, diversity and inclusion professionals. Conclusion: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. Patient or Public Contribution: We involved members of the public with lived experience throughout this study—co‐design, co‐facilitation, collaboratively mapping the disability or disability‐related survey questions into conceptual models of disability, evaluation of the activities, co‐analysis and co‐authorship. [ABSTRACT FROM AUTHOR]

Abstract Background Involving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. Main body Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors’ experience. We explore this using case studies from our own institution. Conclusion We conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval ‘just in case’, leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem.

Abstract Background While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to address racial equality in public involvement. This paper describes how the UK’s National Institute for Health and Care Research (NIHR) convened a Race Equality Public Action Group (REPAG), which co-developed with public contributors and stakeholders a Race Equality Framework – a tool for addressing racial equality in public involvement. Methods The REPAG, through meetings and discussions, defined the focus of the Framework, and developed an initial draft of the Framework. Public contributors identified the need for broader consultation with other public members. Three community consultation events with a total of 59 members of Black African-, Asian- and Caribbean-heritage communities were held to seek their views on health and care research generally and on the draft Framework specifically. The draft Framework was modified and piloted among 16 organisations delivering health and care research. Following feedback from the pilot, the Framework was modified and prepared for publication. Results The Framework is designed as a self-assessment tool comprised of 50 questions pertaining to five domains of organisational activity: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions were co-designed with REPAG public members and provide key concepts and elements of good practice that organisations should consider and address on their path to achieving racial competence. The accompanying materials provide implementation guidance with 20 detailed steps, case studies of actions taken in seven pilot organisations, and links to additional resources. The pilot demonstrated the feasibility of conducting a meaningful self-assessment over a period of three months and the usefulness of the results for developing longer-term action plans. Conclusion The Framework represents the first self-assessment tool for addressing racial equality in public involvement. Co-design with REPAG public members enhanced its authenticity and practicality. Organisations in the field of health and care research and any other organisations that use partnerships with the public are encouraged to adopt the Framework.

Objective: Patient and public involvement (PPI) in health research is now well-established, whilst science, technology, engineering and mathematics (STEM) research has shifted from a focus on science communication alone to public engagement (PE) within its research processes. Despite frequently drawing on similar theoretical influences, and practical motivations, there is often a lack of dialogue between such settings meaning shared learning, practice and evidence from these two sectors are rarely pooled. Methods: In this article, we examine findings from a conceptual review of literature gathered between 1996 and 2019. Results: Analyzing 142 peer-reviewed articles, we ascertain shared definitions and concepts in patient and public involvement and public engagement, identifying key differences and similarities. Conclusion: The literature we review supports the notion that, in terms of origins, there are two distinct traditions, one based in science communication and one based in what we describe as public involvement in shared decision-making. Innovation: We find evidence that the two traditions are converging but our work also calls for the need for further conversations between these two settings, which are exploring intersecting issues but from parallel pathways.

Background: Involving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. Main body: Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors' experience. We explore this using case studies from our own institution. Conclusion: We conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval 'just in case', leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem. Plain English summary: Involving and engaging members of the public is recognised best practice in university research and teaching. Involvement and engagement activities (for instance, working with the public to design a research study) continue to increase in priority and are an important part of an academic's role. However, there is often confusion amongst researchers and educators around whether involving the public in these activities requires prior ethical approval, similar to what would be the case when inviting members of the public to participate in a clinical research study, or to donate samples such as blood for experiments. As an example, sometimes researchers are asked for ethical approval by scientific journals when trying to publish the findings from their public involvement and engagement work, when in fact this is not needed. The ongoing uncertainty about the difference between actual research on one hand and public involvement and engagement on the other hand wastes precious time and resources, and is a barrier for scientists to working with the public. We have developed guidance for academic staff on when ethical approval is and is not required, using examples from our own experience. We wrote this article to bring awareness to this problem; share our views with the wider academic community; encourage discussion around the problem and possible solutions; and ultimately contribute to educating on when research ethics approval is needed, and when not. [ABSTRACT FROM AUTHOR]

While there is growing interest in the design and deployment of smart and modular homes in the UK, there remain questions about the public’s readiness and willingness to live in them. Understanding what conditions prospective residents might place upon the decisions to live in such homes stands to improve their design, helping them to meet with the expectations, and requirements of their residents. Through direct interaction with a prototype of a smart and modular home within a university context, the current study investigated how people negotiate the prospect of smart and modular living, and the conditions they would place on doing so. The study explores the short observational experiences of 20 staff and students within a UK university context, using think aloud interviews. Findings indicate that whilst participants were able to identify the benefits of smart and modular homes, there were nuanced responses when they negotiated the challenges of living. Further, a framework of considerations and recommendations are presented which could support practitioners and policy makers in making more informed, citizen-led decisions on ways to adapt and improve these home solutions. [ABSTRACT FROM AUTHOR]

Background: While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to address racial equality in public involvement. This paper describes how the UK's National Institute for Health and Care Research (NIHR) convened a Race Equality Public Action Group (REPAG), which co-developed with public contributors and stakeholders a Race Equality Framework – a tool for addressing racial equality in public involvement. Methods: The REPAG, through meetings and discussions, defined the focus of the Framework, and developed an initial draft of the Framework. Public contributors identified the need for broader consultation with other public members. Three community consultation events with a total of 59 members of Black African-, Asian- and Caribbean-heritage communities were held to seek their views on health and care research generally and on the draft Framework specifically. The draft Framework was modified and piloted among 16 organisations delivering health and care research. Following feedback from the pilot, the Framework was modified and prepared for publication. Results: The Framework is designed as a self-assessment tool comprised of 50 questions pertaining to five domains of organisational activity: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions were co-designed with REPAG public members and provide key concepts and elements of good practice that organisations should consider and address on their path to achieving racial competence. The accompanying materials provide implementation guidance with 20 detailed steps, case studies of actions taken in seven pilot organisations, and links to additional resources. The pilot demonstrated the feasibility of conducting a meaningful self-assessment over a period of three months and the usefulness of the results for developing longer-term action plans. Conclusion: The Framework represents the first self-assessment tool for addressing racial equality in public involvement. Co-design with REPAG public members enhanced its authenticity and practicality. Organisations in the field of health and care research and any other organisations that use partnerships with the public are encouraged to adopt the Framework. Plain English summary: For a long time, race equality within research has not been a priority. To address this the NIHR created a group to come up with solutions to tackle this – the Race Equality Public Action Group. Recognising the need to help research organisations with how they involved members of the public from diverse groups, the Race Equality Framework was born. The Race Equality Framework was devised to help organisations become more inclusive, develop better links with diverse communities and make their work more equitable. Consultation with members of the public from Black African-, Asian- and Caribbean-heritage communities were held and were essential in developing the Framework. Sixteen organisations who are involved in health and care research were recruited as pilot partners. They worked through the Framework and provided further feedback and input. The final product is a self-assessment tool which comprises of 50 questions across five domains. These domains are: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions are designed to promote reflection and improve organisational good practice. This is the first tool of its kind, and we recommend its use for health and care research organisations that work closely and develop partnerships with members of the public. [ABSTRACT FROM AUTHOR]

Background and Objectives Providing preferred leisure activities appears to be an important approach to support and empower people receiving adult day services (ADS) allowing them to age in place. To provide the conceptualization for a preference instrument, we actively involved people receiving ADS in exploring the content and structure of their preferences for leisure activities. Research Design and Methods We chose a concept mapping methodology and involved 16 people receiving ADS. We systematically reviewed the literature and conducted semistructured interviews to generate a set of 80 preferences. Analysis of structuring these preferences resulted in a 3-dimensional cube with 12 clusters. A graphical representation was then interpreted , and the clusters were labeled. Results Our conceptualization divides preferences for leisure activities into the following: 1. Take a trip , 2. Revel in memories and catch up on the news (most important), 3. Do something for yourself and come to rest , 4. Play intelligence and parlor games , 5. Make/produce and try something alone or in a group , 6. Keep fit and cheer others on in sports (least important), 7. Learn, educate, and share knowledge , 8. Have contact with other people , 9. Attend at entertainment, cultural, and amusement events , 10. Enjoy music, your homeland, or other countries , 11. Engage in outdoor activities , and 12. Get involved, offer support, and provide companionship. Discussion and Implications Our results may lead to the development of instruments and thus opens the field for further research and theory building on preferences for leisure activities of people receiving ADS. [ABSTRACT FROM AUTHOR]

Background: There is significant health inequity in the United Kingdom (U.K.), with different populations facing challenges accessing health services, which can impact health outcomes. At one London National Health Service (NHS) Trust, data showed that patients from deprived areas and minority ethnic groups had a higher likelihood of missing their first outpatient appointment. This study's objectives were to understand barriers to specific patient populations attending first outpatient appointments, explore systemic factors and assess appointment awareness. Methods: Five high-volume specialties identified as having inequitable access based on ethnicity and deprivation were selected as the study setting. Mixed methods were employed to understand barriers to outpatient attendance, including qualitative semi-structured interviews with patients and staff, observations of staff workflows and interrogation of quantitative data on appointment communication. To identify barriers, semi-structured interviews were conducted with patients who missed their appointment and were from a minority ethnic group or deprived area. Staff interviews and observations were carried out to further understand attendance barriers. Patient interview data were analysed using inductive thematic analysis to create a thematic framework and triangulated with staff data. Subthemes were mapped onto a behavioural science framework highlighting behaviours that could be targeted. Quantitative data from patient interviews were analysed to assess appointment awareness and communication. Results: Twenty-six patients and 11 staff were interviewed, with four staff observed. Seven themes were identified as barriers – communication factors, communication methods, healthcare system, system errors, transport, appointment, and personal factors. Knowledge about appointments was an important identified behaviour, supported by eight out of 26 patients answering that they were unaware of their missed appointment. Environmental context and resources were other strongly represented behavioural factors, highlighting systemic barriers that prevent attendance. Conclusion: This study showed the barriers preventing patients from minority ethnic groups or living in deprived areas from attending their outpatient appointment. These barriers included communication factors, communication methods, healthcare the system, system errors, transport, appointment, and personal factors. Healthcare services should acknowledge this and work with public members from these communities to co-design solutions supporting attendance. Our work provides a basis for future intervention design, informed by behavioural science and community involvement. [ABSTRACT FROM AUTHOR]

Introduction: Those with severe and enduring mental ill health are at greater risk of long‐term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research. Methods: The aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted. Results: This priority setting exercise guided by people's needs and lived experience has produced a set of well‐defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities. Conclusions: Taking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health. Patient or Public Contribution: This work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops. [ABSTRACT FROM AUTHOR]

The application of the crowdsourcing model to instant delivery has achieved remarkable success. Various crowdsourced logistics platforms have successfully addressed the challenges of last-mile delivery in urban areas by eliciting the active involvement of the public. This study takes a dual-market perspective and, considering the high requirements of instant delivery for timeliness, introduces two crucial factors: platform subsidies and the degree of public involvement. We establish a pricing model based on the Hotelling model and conduct in-depth research on the platform's maximum profit and equilibrium pricing under different user attribution conditions. This study reveals that when the dispatching party has a single attribution, the platform can increase profits by reducing the intensity of cross-network externalities or increasing user transfer costs. In cases where the dispatching party has partial multiple attributions and the receiving party has a single attribution, lowering network externalities, increasing platform subsidies, enhancing public involvement, improving platform technical matching rates, and increasing the expected order quantity of the dispatching party all effectively increase the platform's maximum profit. When both sides of users have partial multiple attributions, increasing public involvement increases the platform's maximum profit. This research provides new theoretical support for the pricing strategy of crowdsourced logistics platforms. [ABSTRACT FROM AUTHOR]

ABSTRACT Introduction There is growing scientific and policy recognition that optimising health before a potential pregnancy (preconception health) improves reproductive outcomes and the lifelong health of future children. However, public awareness on this topic is low. We conducted a public consultation to develop language recommendations and identify and prioritise approaches to inform research and improve public awareness of preconception health. Methods A public consultation was undertaken with people of any gender aged 18–50 years living in the United Kingdom who were not currently expecting a child. Public contributors were recruited through patient and public involvement, community and support groups, an existing cohort study, and an LGBTQ+ charity. An initial round of online group discussions (February/March 2021) explored public contributors' knowledge of preconception health, their recommendations for appropriate language, and ideas about public health approaches. In a subsequent discussion round (May 2021), language recommendations were refined and suggested approaches prioritised. Discussions were summarised based on notes taken by two researchers. Results Fifty‐four people joined the initial discussion round (66% women, 21% men, 13% nonbinary or transgender; 55% aged 18–30 years, 30% 31–40 years, 15% 41–50 years). Of these, 36 people (67%) participated in the subsequent round. Very few had heard the term ‘preconception health’, understood what it means, or why and for whom it is important. They recommended avoiding unfamiliar terms without further explanation (e.g., preconception health, medical terms), using language that is positive, encouraging and gender‐sensitive where possible, and using messages that are specific, nonjudgmental and realistic. The phrases ‘health and well‐being during the childbearing years’, ‘health and well‐being before pregnancy and parenthood’ and ‘planning for parenthood’ resonated with most public contributors. School‐based education, social media campaigns and the National Health Service emerged as priority approaches/settings for raising awareness. Conclusion This public consultation produced recommendations from a diverse group of people of reproductive age in the United Kingdom to improve language and prioritise approaches that increase public understanding of preconception health in ways that are relevant and appropriate to them. This should begin in schools and will require adaptation of curricula, alongside co‐development of public awareness campaigns and guidance for healthcare professionals. Patient or Public Contribution This public consultation included a diverse group of members of the public. They were not involved in the original design of the project, but following the initial round of online group discussions, they contributed to the interpretation and refinement of the emerging concepts in a subsequent round of group meetings. After the consultation activity, public contributors formed a Public Advisory Group and have subsequently been involved in other studies on the same topic. Two public contributors (E.R. and F.F.) provided critical input in the preparation and revision of this manuscript and are co‐authors of the paper.

ABSTRACT Introduction As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy‐making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy‐making for older adults. Methods A systematic search of peer‐reviewed and grey literature (English only) describing public engagement initiatives in health policy‐making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy‐making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation‐type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion This review describes how public engagement practices have been conducted to help inform health policy‐making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or Public Contribution Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

ABSTRACT Introduction To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review.

ABSTRACT Background Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper.

Background People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods Work package 1 rapid scoping reviews – three reviews focused on the health and social care needs of older people with learning disabilities and ‘behaviours that challenge others’, and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice – analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 – co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 – three stakeholder workshops co-produced service recommendations. Findings The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘behaviours that challenge others’. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. ‘Planning Ahead’ cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers’ forum, a film, a podcast and academic papers. Conclusions There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. ‘Behaviours that challenge others’ was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families’ plans, and therefore change, may be frustrated by insufficient service resources. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information. Plain language summary People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with ‘behaviours that challenge others’. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of ‘behaviours that challenge others’ is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age. Scientific summary Background While a significant age gap remains in mortality between people with learning disabilities (PWLD) and the general population, more PWLD are growing older. Research shows that parents of PWLD are dissatisfied with social care services and concerned about the future of their adult child. Various policies aim to enable PWLD to live independently with support; however, family carers often maintain long-term care. This can generate a crisis for the PWLD, who may be moved to an alternative home that may not be appropriate for them. Our research focuses on PWLD aged ≥ 40 years in line with evidence that people may experience early onset of long-term conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders. Aim The aim was to improve support for family carers, older PWLD (aged ≥ 40 years) and ‘behaviours that challenge others’ (‘BTCO’) by producing effective recommendations and resources to support planning ahead for a good older age. Objectives Develop an understanding of what is known about the health needs, service interventions and resources for older PWLD, with a focus on those labelled with ‘BTCO’, and family carers [work package 1 (WP1)]. Identify exemplars of good practice in services in the UK for older PWLD, and their family and professional carers towards the end of life (WP2). Explore service exemplars through ethnographic case studies (WP3). Evaluate support for older PWLD and their families through the co-production and testing of decision aid tools to support future planning (WP4). Co-produce recommendations with PWLD, carers, providers, social workers and commissioners, and resources for older PWLD, family and support workers and social workers (WP5). Methods Work package 1: systematic scoping reviews Three rapid scoping reviews (RRs) focused on the health and social care needs of older PWLD and ‘BTCO’ (RR1), the health and social care needs of family carers of older PWLD and ‘BTCO’ (RR2), and how care can be best co-ordinated for older PWLD and ‘BTCO’ (RR3). Literature including research articles, reports, policy and practice guidance was included. RR1 and RR2 included UK-related evidence from 2001, and RR3 had no date restriction and was international in scope. Older PWLD were defined as those aged ≥ 40 years. ‘Family carers’ included parents and siblings. Care contexts encompassed any community living. We focused our search strategy on ‘challenging behaviour’, ‘ageing’ and ‘learning disability’. Data were extracted into a form and considered alongside non-research information and guidance relevant to older PWLD and ‘BTCO’, and their family carers. A narrative approach was combined with insights from the research team and Project Advisory Groups. A three-stage inductive process was applied: development of a coding framework; development of descriptive themes and subthemes; and development of analytical themes and subthemes. Database searches yielded 261 returns, and a subsequent extended search for RR1 yielded 355 returns; 9 papers were included. RR2 searches yielded 157 returns; 7 items were included. RR3 searches yielded 1449 returns, with 9 included. Work package 2: scoping and mapping exemplars of good practice in living arrangements in the community for older people with learning disabilities and ‘behaviour that challenges others’ Published service standards and grey literature of WP1 were analysed into themes supporting criteria to judge the excellence of services. Data from the mapping of services were subject to rapid analysis to refine the criteria, and further criteria were generated about participants’ relationships with services. A mapping exercise aimed to identify if services met the criteria for excellence. Multiple routes were used to identify the commissioning and provision of exemplar services and to find out key information about services using interviews (n = 30), an online survey (n = 9), websites and other documentary sources, including a search of Care Quality Commission (CQC) reports. Data generation produced descriptions of services and critiques of the criteria of excellence. Analysis involved coding and summarising information into a template including how the service met the criteria, the service model and who the services were provided to. The templates were presented to the research team and Advisory Groups for a final decision on the list of excellent services for WP3. Work package 3: ethnography of exemplar community living models Nine case studies of four models of provision: independent supported living (n = 4), residential nursing home (n = 2), living with family and using day activities (n = 1) and Shared Lives (n = 2). Shared Lives is a national scheme in which PWLD live as part of a family usually funded by the local authority (LA). Ethnographic fieldwork was conducted by academics and co-researchers with lived experience. Sites were dispersed across England. Researchers spent approximately 20 days within each model of care. Interviews were conducted with 95 PWLD including people who would be described by services as having severe learning disabilities and/or complex needs, family carers, support workers and managers, and commissioners. A thematic data analysis of observation notes, interview transcripts and policy documents was undertaken. Coding categories evolved iteratively. Mind maps and more conceptual analysis of meaning, action and process were used, capturing the micro-detail of participants’ lives. Co-researchers were involved in a section of analysis using audio and written extracts of data. The opening of a second residential nursing site selected during proposal development was delayed. Modified ethnographic data collection methods, including documentary analysis of planning meetings, interviews with the service development project manager, lead commissioner, a LA councillor, the chairperson of a parent carer group, and the co-design process, were considered in interviews and by observation. Work package 4: co-production and testing of resources for older people with learning disabilities and their families Co-design methods explored what approaches are considered appropriate by PWLD and family carers, and a set of resources for PWLD and families was co-produced. The team included a research assistant with learning disabilities. Thirty-six people (9 PWLD, 11 parents, 16 siblings) took part in interviews and focus groups using communication aids Books Beyond Words and Talking Mats™. Data were analysed using a Framework approach. An experience-based co-design approach was used to produce a decision-making resource. Twelve online sessions were held with 11 participants, including a core group of 4 PWLD and 4 parents, to develop the resources. A small-scale evaluation tested these with eight families across a 2-month period. This focused on the usefulness of the resource, the impact of planning actions and feedback for improvement. Data were collected twice using a questionnaire. Work package 5: methods This WP aimed to co-produce recommendations for commissioners and providers, resources for carers and PWLD, and online training materials for social workers and support staff. Participants in two co-design workshops (n = 45 and n = 30) shared initial findings and discussed developing recommendations. A third workshop (n = 22) focused on the developing recommendations, and research priority setting in the north of England. Participants included a wide range of stakeholders: PWLD and family carers, NHS England, NHS, the CQC, LA delegates, disability charity organisations, service providers, commissioners and academics. Findings Work package 1 Rapid review 1 generated four themes: transition over time, including proactive planning for circumstances in which PWLD are no longer able to remain in their home; avoiding the need for inappropriate transitions; making transition work; and an absence of targeted resources to support this. There is limited planning by ageing family carers and PWLD, and a need for professional involvement in supporting the family before ageing-related problems become manifest. Commissioners have a responsibility to proactively plan for the delivery of appropriate housing and support, requiring robust databases of ageing family carers and older PWLD. Rapid review 2 generated four themes: a lack of accessible advice, information and support for families to plan ahead; challenges facing family members with their own needs; the lack of availability of suitable housing and support; and lack of targeted resources to guide PWLD, family carers or professionals in planning ahead. Rapid review 3 identified three layers to co-ordinating care for older PWLD. For individuals this is communicating effectively and co-ordinating care to pre-empt the effects of ageing, delivered by skilled staff. At service level this is co-ordination across teams and services including housing, drawing on those with expertise in learning disabilities. At local/regional level, this is commissioning services taking account of current and future age-related needs. The reviews confirmed an inadequate evidence base concerning the experiences, needs and support of family carers of older PWLD, who are being supported when their family member’s preference is to remain at home and/or to achieve a potential move where appropriate and desired. WP1 also highlighted the conceptual limitations of the term ‘BTCO’. Work package 2 The final criteria of excellence were: personalisation, with goals, daily plans and activities shared and updated matching staff to people being supported personalised living space and choice around who this is shared with proactive, preventative health care involving primary care, and involvement of NHS multidisciplinary learning disability teams staff recruitment underpinned with the right values and skills high staff retention to provide continuity of care inclusive communication methods family involvement community engagement and inclusion trauma-informed services where appropriate good practices such as end-of-life care planning, dementia assessment and management embedded as routine commissioner endorsement of provider quality and resilience commissioners working with providers, PWLD and families in building capacity for future services. The mapping involved review of 330 potentially relevant locations, which was reduced to 74 after consideration of the relevance of the service to older PWLD. There was contact with around 260 people across England, which led to 89 contacts who provided information in formal interviews and informal discussions, via online meetings and by e-mail about at least one specific service, with around 3–6 provider and commissioner perspectives on the same services. A shortlist of 15 services was agreed for consideration in WP3. Work package 3 Findings were organised around environmental, organisational and social factors. Environmental factors supporting independence, and choice over who people interact with, were maximised for those living on their own or with people they chose to live with. Organisational factors related to systems that support good and consistent relationships with support staff, staff matching, aspirational support and adapting to changing needs as people age. Commissioners that actively plan for adapting care packages and contingency provision were seen to avoid crises. Planning for end-of-life care was not well supported by policies and practices except in the nursing home and one supported living provider. Shared Lives provision actively supported people who were developing dementia. Social factors included maintaining family and community relationships and being supported to do a range of activities. The label of ‘BTCO’ could be removed with consistently good support and environment. Poor practices of institutionalisation were observed, where staff schedules over-rode choice and/or duration of activities. Small providers that had strong values and management engagement with support workers were more able to offer consistently good support than larger organisations where excellent support can exist alongside examples of poor support. Observation of planning for a new nursing home offered useful insights into the challenges involved in growing capacity for local services for PWLD as they age, while adhering to models of excellent care. The research showed the extent to which independence, choice in relationships, support for healthy ageing, and meaningful activity including work was evidenced in different ways across providers, with some failing to achieve this despite the rhetoric and aspirations of providers and commissioners. Work package 4 Families were acutely aware of the need to plan ahead and were worried about the future, unaware of and unsupported to explore options. Co-design sessions stimulated ideas and discussion and the content and format of a decision-making resource was produced based on what worked for family carers and PWLD. This comprised a set of 102 ‘Planning Ahead’ cards and a ‘Me and my plans’ booklet in which families could record their discussions and plans. What participants wanted in their home reflected WP3 findings about the factors that enable excellence in care. They wanted to choose who they lived with; to be supported by people who know them well and care for them; to live in a location that suits their lives; and to have control over what they do and when. The lack of awareness of alternatives and absence of social work support was striking. In some cases, the lack of options led to parents ignoring the future, denying PWLD the opportunities to have lives that their peers without learning disabilities can have. Work package 5 Formative discussion across three stakeholder workshops informed the development of recommendations about how to raise awareness and improve access to information about planning and options. The workshops involved a range of stakeholders, and short films were used to present developing project analysis and raise key questions. Discussion focused on improved needs assessment data including for those not known to services; improved peer learning by providers and commissioners, and funding of self-advocacy groups to support people’s local decision-making; and improved individual support by matching staff to people and enabling staff to celebrate their successes. To support dissemination, a session plan was created in standard and Easy Read versions to enable self-advocacy groups to contribute to the development of practical recommendations for providers and commissioners. Resources Project outputs include two OpenLearn courses, one for practitioners and one for family carers; a training resource to support researchers, PWLD and family carers to work together as ethnographers; a resource for social workers hosted by the British Association of Social Workers; a carers’ forum hosted on Facebook; a short film; a podcast about the experience of taking part in the project; blogs; and a range of publications for non-academic audiences and academic papers. Limitations While a systematic approach was taken to reviews and mapping services, it is possible that some evidence was missed in WP1 and WP2. The COVID-19 pandemic created challenges for participant recruitment, and workarounds were needed. One ‘excellent’ site withdrew early in WP3 due to staffing issues caused by the pandemic. Reliance on providers for recruitment in WP3 resulted in a sample limited to White British participants. Participation may have influenced providers to present excellence and hide less good practice, but, given the mix of provision observed, this was a low risk. The discussion cards produced in WP4 may be in formats and have content that exclude some people. This needs to be tested further. Attempts to plan by families may be frustrated by insufficient resources and options to achieve what people want, raising expectations that cannot be met. Conclusions There is little research on older PWLD and family carers. Some participants were leading good lives in their own homes with excellent support from staff who knew them well. Even largely excellent services vary in their proactive approach to planning for older age support and end-of-life care. Families are often unsupported to plan ahead, and PWLD are by default left without choices about their future lives. The label ‘BCTO’ was found to be an unhelpful term that did not stimulate discussion of personalised care and rights to autonomy. It had little practical utility in the ethnographic research and was absent in the reviews. Research recommendations The over-riding recommendation is the urgent need for a new strategy for older PWLD and family carers that encompasses commissioning practices (including the sharing of best practice); professional input (roles and responsibilities, the role of social workers, support staff skills and training); proactive support to live and age well; and excellent service design (appropriate, sustainable, local and adaptable housing that enables people to age and die in place). Recommendations are made for improved proactive health care, organisational learning, matching and support for staff, and ‘try before you buy’ options to support choice and personalisation. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older PWLD from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature and pet ownership; access to mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

Abstract Background Lived Experience (LE) involvement has been shown to improve interventions across diverse sectors. Yet LE contributions to public health approaches to address gambling-related harms remain underexplored, despite notable detrimental health and social outcomes linked to gambling. This paper analyses the potential of LE involvement in public health strategy to address gambling-related harms. It focuses on the example of a UK city-region gambling harms reduction intervention that presented multiple opportunities for LE input. Methods Three focus groups and 33 semi-structured interviews were conducted to hear from people with and without LE who were involved in the gambling harms reduction intervention, or who had previous experience of LE-informed efforts for addressing gambling-related harms. People without LE provided reflections on the value and contributions of others’ LE to their work. Data analysis combined the Framework Method with themes developed inductively (from people’s accounts) and deductively (from the literature, including grey literature). Results Four themes were identified: (1) personal journeys to LE involvement; (2) the value added by LE to interventions for addressing gambling-related harms; (3) emotional impacts on people with LE; and (4) collective LE and diverse lived experiences. Two figures outlining LE involvement specific to gambling harms reduction in the UK, where public health efforts aimed at addressing gambling-related harms coexist with industry-funded programmes, are proposed. Conclusions Integrating a range of LE perspectives in a public health approach to gambling harms reduction requires local access to involvement for people with LE via diverse routes that are free from stigma and present people with LE with options in how they can engage and be heard in decision-making, and how they operate in relation to industry influence. Involving LE in gambling harms reduction requires enabling people to develop the affective and critical skills necessary to navigate complex emotional journeys and a challenging commercial and policy environment.

Abstract Introduction Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall aim of the CHANGE trial is to evaluate the efficacy and cost-effectiveness of an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) plus treatment as usual (TAU) versus TAU for symptoms of depression and/or Generalized Anxiety Disorder in a superiority randomized controlled trial with an internal pilot phase. In this protocol we describe how we aim to: (1) involve parents of children treated for cancer in the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial; and (2) examine the acceptability, feasibility, and perceived impact of Parent Advisory Board contribution to the trial from the perspective of board members and public contribution coordinators. Methods We will recruit around six parents of children treated for cancer to the Parent Advisory Board. Board members will contribute throughout the trial during online workshops and steering group meetings. An impact log will be used during workshops to record activities and examine the perceived impact of activities according to board members and public contribution coordinators, including anticipated and unanticipated changes to the research process and potential benefits and harms. Activities will be reported using the Guidance for Reporting Involvement of Patients and the Public checklist. We will conduct semi-structured interviews with board members and public contribution coordinators 6 months after the board is established and at the end of the trial to examine the acceptability, feasibility, and perceived impact of public contribution activities. We will also conduct interviews with board members and public contribution coordinators who withdraw participation. Findings will be reported in accordance with the Standards for Reporting Qualitative Research checklist. Discussion We hope adding public contribution to the CHANGE trial will provide guidance on how to embed public contribution in research and add to the evidence base concerning the impact of public contribution.

Abstract Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences involving members of the public in the SIPHER Consortium, a data-intensive policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. We focus on evaluating people’s experiences as part of Community Panels for SIPHER. Key issues familiar from general public involvement efforts include practical details, careful facilitation of meetings, and payment for participants. We also describe some of the more particular learning around how to communicate technical research to non-academic audiences, in order to enable public scrutiny of research decisions. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and properly resourced.

Abstract Background Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understand whether creative processes can enable public-participants and researcher- participants to meet in a neutral space to discuss a research theme and begin to build collaborative relationships through more equal engagement. Ideas could be taken forwards with seed funding, providing opportunity for collaboration to continue beyond initial workshops. Methods Different artist partners designed and facilitated four workshops. Evaluation data was collected on each workshop using participatory observation and fieldnotes, alongside chatlog data, and one-to-one interviews with 21 workshop participants, providing a contextually rich, comparative evaluation across four diverse workshops. Analysis was thematically driven. Results Artist partners took different approaches to designing workshops. The workshops began with introductory games and activities, and there was less emphasis on introductions of people’s roles, with the intention to avoid hierarchical dynamics. Whilst public-participants enjoyed this, some researchers found it challenging and reported confusions over their workshop roles. Disrupting usual practice and challenging norms was not always an easy experience. There were examples where emergent, co-created knowledge was enabled. However, it was more challenging to facilitate longer-term collaborative research projects from the workshops due to different stakeholder priorities, and lack of staff time/ less sense of ownership for further work. Conclusions Creative activities can influence and impact the types of conversations between public-participants and researchers in a way that changes and challenges power dynamics, shifting towards public-participant driven discussion. Whilst deconstructing hierarchies is important, supporting researchers is key so that any discomfort can be productive and experienced as a vital part of co-production. Longer term collaborative research projects were limited, highlighting a need for facilitation beyond initial workshops, and a sense of ownership from workshop participants to take things forwards. Workshops like these may lend themselves well to research prioritisation. However, taking community-led ideas forwards within research funding landscapes remains challenging.

This study develops an integrated methodology to incorporate public perspectives into the establishment and development of public transportation infrastructure systems. The approach involves surveying citizens to collect data, performing demographic analyses to identify differences between cities, and applying Multi-Criteria Decision-Making (MCDM) techniques to weight, scale, and integrate evaluation criteria in order to determine the optimal transportation option. The primary aim of this research is to incorporate public perspectives into transportation planning in developing countries and to promote stakeholder engagement for transportation initiatives in cities such as Baghdad, Iraq, and Tehran, Iran. First, an initial survey was conducted to identify the top three preferred criteria among 200 participants from both cities. The survey results revealed that the three most important criteria were safety, travel time, and reliability. Subsequently, a larger survey utilizing the Saaty scale was administered to capture citizens’ preferences, with a total sample size of 550 from Baghdad and 345 from Tehran. The weights of the criteria were then calculated using the Group Analytical Hierarchy Process (GAHP). Three transportation alternatives—monorail, Light Rapid Transit (LRT), and metrobus—were suggested by transportation experts to be evaluated and ranked using the Technique for Order Preference by Similarity to Ideal Solution (TOPSIS) based on the weighted citizen preferences. The results indicate that for Baghdad residents, transportation safety is the most important priority, followed by reliability and travel time. However, LRT is rated as the most optimal transportation solution (0.721), followed by monorail (0.596) and metrobus (0.078). In Tehran, travel time represents the most preferred transportation attribute, followed by reliability and safety. The residents of Tehran are shown to prefer LRT (0.843), followed by monorail (0.370) and metrobus (0.143). Despite the similar ranking of transportation alternatives in the two cities, the performance scores differ between them, highlighting the importance of tailoring transportation planning to the unique preferences and needs of local communities. The validation of the results was conducted through sensitivity analysis to determine how variations in the criteria weights and input parameters affected the final rankings. Additionally, a stated preference survey was employed as a practical method to evaluate the robustness of the final ranking of the alternatives.

Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences involving members of the public in the SIPHER Consortium, a data-intensive policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. We focus on evaluating people's experiences as part of Community Panels for SIPHER. Key issues familiar from general public involvement efforts include practical details, careful facilitation of meetings, and payment for participants. We also describe some of the more particular learning around how to communicate technical research to non-academic audiences, in order to enable public scrutiny of research decisions. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and properly resourced. Plain English summary: Actively involving members of the public is less common in 'data-intensive health research' (health research which does not create new data but focuses on analysing big existing datasets of statistics) than in conventional health research. 'Computational policy modelling' is an example of data-intensive health research where public involvement is not yet standard practice. This article describes our experiences involving members of the public in the SIPHER Consortium, a policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. This paper focuses on evaluating people's experiences as part of Community Panels for SIPHER. We brought together people with lived experience of health inequalities into three Community Panels, and we met for half a day 3-4 times a year to discuss and give feedback on the research. At first, it was difficult for Panel members to understand the research. Researchers had to try harder to avoid jargon, explain their work in plain English, and focus on the impact of the research in the 'real world'. Both the researchers and the Panel members learned how to communicate better over repeated meetings. Over time, we managed to have meaningful discussion of the choices researchers were making, so Panels could see their impact on the research. It was important that details of the meetings – planning meetings carefully so everyone feels welcome and valued, providing support with digital technology, financially rewarding people for their time – were taken seriously. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and takes time and money to get right. [ABSTRACT FROM AUTHOR]

Introduction: Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall aim of the CHANGE trial is to evaluate the efficacy and cost-effectiveness of an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) plus treatment as usual (TAU) versus TAU for symptoms of depression and/or Generalized Anxiety Disorder in a superiority randomized controlled trial with an internal pilot phase. In this protocol we describe how we aim to: (1) involve parents of children treated for cancer in the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial; and (2) examine the acceptability, feasibility, and perceived impact of Parent Advisory Board contribution to the trial from the perspective of board members and public contribution coordinators. Methods: We will recruit around six parents of children treated for cancer to the Parent Advisory Board. Board members will contribute throughout the trial during online workshops and steering group meetings. An impact log will be used during workshops to record activities and examine the perceived impact of activities according to board members and public contribution coordinators, including anticipated and unanticipated changes to the research process and potential benefits and harms. Activities will be reported using the Guidance for Reporting Involvement of Patients and the Public checklist. We will conduct semi-structured interviews with board members and public contribution coordinators 6 months after the board is established and at the end of the trial to examine the acceptability, feasibility, and perceived impact of public contribution activities. We will also conduct interviews with board members and public contribution coordinators who withdraw participation. Findings will be reported in accordance with the Standards for Reporting Qualitative Research checklist. Discussion: We hope adding public contribution to the CHANGE trial will provide guidance on how to embed public contribution in research and add to the evidence base concerning the impact of public contribution. Plain English summary: Involving the public in research can help improve research. However, we do not know so much about what impact it has. Here, we describe how we will involve parents of children treated for cancer in the CHANGE trial and how we will examine the impact of their contribution. Even years after end of treatment parents can experience difficult emotions, such as depression and anxiety. We have therefore developed an internet-administered self-help intervention called EJDeR for parents of children treated for cancer. In the CHANGE trial we will evaluate whether EJDeR reduces parent's depression and anxiety. We will recruit around six parents to a Parent Advisory Board. Board members will help us to: (1) manage and undertake the CHANGE trial including designing trial procedures e.g., participant-facing material and interview guides; and to steer the trial e.g., discuss trial progress and produce research updates; (2) interpret findings; and (3) plan how to communicate findings to parents and the surrounding community. Board members will participate in online workshops. We will record all activities and whether, and if so how, activities are perceived to impact on the CHANGE trial. Board members will also participate in steering meetings with members of our research team. We will interview board members and public contribution coordinators about their experiences working with us and contributing to the CHANGE trial. We hope this approach will help us and other researchers to understand the potential impact of public contribution on research. [ABSTRACT FROM AUTHOR]

Population-based biobanking is an essential element of medical research that has grown substantially over the last two decades, and many countries are currently pursuing large national biobanking initiatives. The rise of individual biobanks is paralleled by various networking activities in the field at both the national and international level, such as BBMRI-ERIC in the EU. A significant contribution to population-based biobanking comes from large cohort studies and national repositories, including the United Kingdom Biobank (UKBB), the CONSTANCES project in France, the German National Cohort (NAKO), LifeLines in the Netherlands, FinnGen in Finland, and the All of Us project in the U.S. At the same time, hospital-based biobanking has also gained importance in medical research. We describe some of the scientific questions that can be addressed particularly well by the use of population-based biobanks, including the discovery and calibration of biomarkers and the identification of molecular correlates of health parameters and disease states. Despite the tremendous progress made so far, some major challenges to population-based biobanking still remain, including the need to develop strategies for the long-term sustainability of biobanks, the handling of incidental findings, and the linkage of sample-related and sample-derived data to other relevant resources. [ABSTRACT FROM AUTHOR]

Objective To examine the feasibility of using allied health assistants to deliver patient falls prevention education within 48 h after hospital admission. Design and setting Feasibility study with hospital patients randomly allocated to usual care or usual care plus additional patient falls prevention education delivered by supervised allied health assistants using an evidence-based scripted conversation and educational pamphlet. Participants (i) allied health assistants and (ii) patients admitted to participating hospital wards over a 20-week period. Outcomes (i) feasibility of allied health assistant delivery of patient education; (ii) hospital falls per 1,000 bed days; (iii) injurious falls; (iv) number of falls requiring transfer to an acute medical facility. Results 541 patients participated (median age 81 years); 270 control group and 271 experimental group. Allied health assistants (n  = 12) delivered scripted education sessions to 254 patients in the experimental group, 97% within 24 h after admission. There were 32 falls in the control group and 22 in the experimental group. The falls rate was 8.07 falls per 1,000 bed days in the control group and 5.69 falls per 1,000 bed days for the experimental group (incidence rate ratio = 0.66 (95% CI 0.32, 1.36; P  = 0.26)). There were 2.02 injurious falls per 1,000 bed days for the control group and 1.03 for the experimental group. Nine falls (7 control, 2 experimental) required transfer to an acute facility. No adverse events were attributable to the experimental group intervention. Conclusions It is feasible and of benefit to supplement usual care with patient education delivered by allied health assistants. [ABSTRACT FROM AUTHOR]

Background: Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understand whether creative processes can enable public-participants and researcher- participants to meet in a neutral space to discuss a research theme and begin to build collaborative relationships through more equal engagement. Ideas could be taken forwards with seed funding, providing opportunity for collaboration to continue beyond initial workshops. Methods: Different artist partners designed and facilitated four workshops. Evaluation data was collected on each workshop using participatory observation and fieldnotes, alongside chatlog data, and one-to-one interviews with 21 workshop participants, providing a contextually rich, comparative evaluation across four diverse workshops. Analysis was thematically driven. Results: Artist partners took different approaches to designing workshops. The workshops began with introductory games and activities, and there was less emphasis on introductions of people's roles, with the intention to avoid hierarchical dynamics. Whilst public-participants enjoyed this, some researchers found it challenging and reported confusions over their workshop roles. Disrupting usual practice and challenging norms was not always an easy experience. There were examples where emergent, co-created knowledge was enabled. However, it was more challenging to facilitate longer-term collaborative research projects from the workshops due to different stakeholder priorities, and lack of staff time/ less sense of ownership for further work. Conclusions: Creative activities can influence and impact the types of conversations between public-participants and researchers in a way that changes and challenges power dynamics, shifting towards public-participant driven discussion. Whilst deconstructing hierarchies is important, supporting researchers is key so that any discomfort can be productive and experienced as a vital part of co-production. Longer term collaborative research projects were limited, highlighting a need for facilitation beyond initial workshops, and a sense of ownership from workshop participants to take things forwards. Workshops like these may lend themselves well to research prioritisation. However, taking community-led ideas forwards within research funding landscapes remains challenging. Plain English summary: Create to Collaborate aimed to develop and facilitate creative public involvement workshops with members of the public, researchers, and community organisations, who were potentially interested in collaborating on a future health research project. We wanted to evaluate the extent to which creative, external facilitation by different artists could enable the development of more equal relationships and reduce power differences at the beginning of a research process. We worked with artists who designed and facilitated an online workshop, and community partners who helped recruit members of the public to increase diversity in participation. Then, we delivered and evaluated the workshops to understand different participants' experiences. Four workshops are reported in this article, each focused on a different topic: mental health in school environments, wellbeing in Bristol's Somali community, air pollution, and health data. We took observational notes at the workshops and conducted one-to-one qualitative interviews with 21 workshop participants. Feedback from public-participants taking part in creative workshops led by artist facilitators described them as 'engaging', 'comfortable' and 'equitable'. Researcher-participants reported workshops as 'open', 'inclusive' and 'engaging', whilst also reporting some confusion over what their own roles were and how much they could contribute as academic researchers. The project demonstrates a need for further clarity, particularly for researchers, over what roles may be in setting up a collaborative relationship, and possible disparity in expectations between those attending in an employment capacity and those joining as a public-participant in their own time. [ABSTRACT FROM AUTHOR]

Postpartum psychosis is a psychiatric emergency that is currently not represented in diagnostic systems, to the detriment of people with lived experience. Engaging with stakeholders offers an important avenue to improve clinical practice and make research more impactful, by providing perspectives based on first-hand, expert experience. There is a paucity of reports on stakeholders' engagement in psychiatry. Activities have thus far been limited to Western countries and there are few reports on postpartum psychosis. We report the results of public involvement activities (in the form of discussion groups) with key stakeholders in India, Malawi and the UK. These discussions centred around the clinical picture of postpartum psychosis and the terminologies used to describe these episodes. Seven major areas were highlighted: how postpartum psychosis is handled within services, common symptoms and characteristics, impact of episode, barriers to care, non-medical approaches, terminology and research areas of interest. According to the discussions, postpartum psychosis presents similarly across countries, although there are differences in access to services, approaches to mental health and terminologies used within and across countries. With this understanding comes the foundation for cross-cultural assessment, service improvement and a stakeholder-informed research agenda. [ABSTRACT FROM AUTHOR]

Background UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment for the UK's longitudinal studies. The need for a clear way to communicate Longitudinal Population Study (LPS) participants’ rights was identified through public contributor consultations. UK LLC gathered public views to inform meaningful discussion with NHS England, the National Data Guardian’s Office, and the Health Research Authority to develop a new framework for agreeing consistency in assessment of the legal basis for linking participant self-reported data to participants' health records. The consultation flagged that the legislation around LPS data is complex, confusing, and often inaccessible. This means that it may prove difficult for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are. Introduction The legal basis for using LPS data is complex. Of particular importance are the UK GDPR (General Data Protection Regulations), Common Law Duty of Confidentiality, Digital Economy Act (DEA) 2017 and Section 251 of the NHS Act 2016. Our vision was to produce transparency materials to help LPS participants understand LPS data and the law. Methods We surveyed public contributors from UK LLC, Health Data Research UK and DATAMIND to establish current understanding. We worked in partnership with UK LLC’s Public Advisory Group (PAG) and external organisations to produce a series of infographics (over time also available in audio, BSL and additional languages) to reach as wide an audience as possible. We collaborated with DATAMIND throughout the project sharing insights and ideas. Results A total of 56 people participated in the survey, most of whom lived in England: 30% were LPS participants; 55% were aged 55 and over; and 18% identified as belonging to an ethnic minority group. Survey results showed that the levels of awareness of the laws/legal principles relating to the use of LPS data is generally low. The DEA was least well-known, with 11% of people aware of this legislation. The most well-known among the infographic topics was GDPR, with 88% awareness. We co-developed key messages for LPS participants on what they should be aware of as individuals, including what they should expect from their LPS. This was not a straightforward process due to the exemptions and conditions under each law/legal principle. This led to focus on highlighting the practical implications for participants rather than explaining the laws/legal principles. Across the series, participants are directed to official organisations for further information. Conclusions This series of transparency materials provides a more accessible and easy-to-understand way for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.