Prior research has highlighted important healthcare access and utilization issues among new forced immigrants. We aimed to explore the role that public and patient involvement (PPI) might play in enhancing accessibility and specific contributions to migration health studies. We conducted open and in-depth interactive virtual discussions with asylum seekers and refugees from Eritrea and Syria in Switzerland. The PPI establishment consisted of three phases: inception, training and contribution. Prior to training, the concept of PPI was not straightforward to grasp, as it was a new approach-however, after training and consecutive discussions, participants were ardent to engage actively. We conclude that PPI holds promise in regard to raising awareness, improving healthcare system accessibilities and utilization, and enhancing and strengthening migration health research. Indeed, PPI volunteers were keen to raise their community\'s awareness through their networks and bridge an important gap between researchers and the public.

BACKGROUND: A larger percentage of social housing tenants have poorer physical and mental health outcomes compared to private renters and homeowners. They are also at a greater risk of respiratory conditions, cardiovascular disease, communicable disease transmission and mortality. One approach that aims to reduce health inequalities is to create research partnerships with underserved local communities. Our primary aim was to develop a research partnership with social housing tenants in Nottingham and our secondary aim was to explore the health priorities of these social housing tenants to inform future research applications. We also hope to provide a descriptive process of PPI within a social housing context for other researchers to learn from.
METHODS: We used Public and Patient Involvement (PPI) as the foundation of this work, as we believed that people with lived experience of social housing, also end-users of the research, were best placed to inform us of the areas with the greatest research need. Through online and in-person focus groups, we discussed with tenants, collectively named a Social Advisory Group (SAG), their health concerns and priorities. Together they raised 26 health issues, which were combined with 22 funding opportunity themes being offered by the NIHR (National Institute for Health and Care Research). This was with the purpose of investigating whether there was alignment between the health needs of Nottingham\'s social housing tenants and the NIHR\'s research priorities. A prioritisation technique (Diamond Nine) was used to sort in total, 48 areas of health and wellbeing, into three top priorities. Tenants were provided the opportunity to be involved in public health research in other ways too, such as reviewing this paper and also an NIHR Programme Development Grant application to expand and continue this work. One was also offered the opportunity to be a public co-applicant.
RESULTS: The group prioritised improvements in the quality of social housing, mental health and healthcare services. There was only some alignment between these and the NIHR funding themes. Other factors, such as age and race, also determined individual health priorities. . The diversity and reach of the current project were limited, however this is something we hope to improve in the future with more funding. We learned that tenants have varying degrees of mobility and technological abilities, requiring both online and in-person meetings.
Social housing is offered to people who cannot afford to buy or rent in the open market, and a larger percentage of social housing tenants have poorer physical and mental health outcomes compared to the general population. One approach that aims to reduce health inequalities is to create sustainable research partnerships with underserved local communities. Our primary aim was to involve social housing tenants in public health research, as they are best placed to tell us the type of research they would benefit from. The secondary aim was to explore the health priorities of social housing tenants to inform future research applications. We also hope to describe the process of PPI within a social housing context for other researchers to learn from.To achieve these aims, we established a research partnership with a group of social housing tenants in Nottingham and spoke to them about the areas of their health they wanted to improve (i.e., their priorities). The topics that were discussed the most were the need for improved mental health, quality of social housing and healthcare services, however this varied between individuals according to race and age. We learned several things throughout this process. Firstly, the combination of mobility and technological abilities amongst tenants meant that meetings must be held both in-person and online. This ensured they remained accessible and convenient. Secondly, we learnt that in-person meetings should be held in a neutral space to encourage different members of the group to attend. Finally, in general, people were very enthusiastic about this partnership and were committed to seeing improvements in public health. We therefore provided more opportunities for the group to be involved in research. For example, they were offered the opportunity to write and edit a lay summary for a future research application, which was based on the priorities identified in this paper. One member of the group was nominated to be the public co-applicant , which would allow us to increase the reach of this housing work across the East Midlands. It would also allow us to increase the diversity of the group, as currently it is made up of mostly retired females of British origin. Involving the public in health research has been central to this process and continues to be important in the production of accessible and relevant research.

BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research.
OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research.
METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review.
RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents\' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands.
CONCLUSIONS: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research.
UNASSIGNED: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.

BACKGROUND: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022.
METHODS: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022.
RESULTS: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma.
CONCLUSIONS: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.

Background  Secondary use of health data provides opportunities to drive improvements in healthcare provision, personalised medicine, comparative effectiveness research, health services innovation, and policy and practice. However, secondary data use requires compliance with relevant legislation, implementation of technical safeguards, ethical data management, and respect for data sharers. Existing evidence suggests widespread support for secondary use of health data among the public, which co-exists with concerns about privacy, confidentiality and misuse of data. Balancing the protection of individuals\' rights against the use of their health data for societal benefits is of vital importance, and trust underpins this process. The study protocol explores how to build public trust and confidence in the secondary use of health data through all key stakeholder groups in Ireland, towards developing a culture that promotes a safe and trustworthy use of data. Methods  This study will adopt a qualitative cross-sectional approach conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research COREQ guidelines. Participants in the study will include academics and researchers; healthcare professionals, data protection, ethics and privacy experts and data controllers; pharmaceutical industry and patients and public. Purposive and convenience sampling techniques will be utilised to recruit the participants, and data will be collected utilizing focus groups that may be supplemented with semi-structured interviews. Data will be coded by themes using reflexive thematic analysis (TA) and collective intelligence (CI) will be convened post-analysis to explore the preliminary findings with the participants. Ethics and Dissemination  Ethical approval was obtained from the Royal College of Surgeons in Ireland Research Ethics Committee (REC202208013). Final data analysis and dissemination is expected by Q1 2024. Findings will be disseminated through peer-reviewed journal publications, presentations at relevant conferences, and other academic, public and policy channels. Lay summaries will be designed for Public and Patient Involvement (PPI) contributors and general public.

BACKGROUND: Participatory research (PR) involves engaging in cocreation with end users and relevant stakeholders throughout the research process, aiming to distribute power equitably between the end users and research team. Engagement and adherence in previous workplace health promotion (WHP) studies have been shown to be lacking. By implementing a PR approach, the insights of end users and stakeholders are sought in the co-design of feasible and acceptable intervention strategies, thereby increasing the relevance of the research.
OBJECTIVE: This scoping review aims to explore, identify, and map PR techniques and their impact when used in office-based WHP interventions designed to improve physical activity (PA) or reduce sedentary behavior (SB).
METHODS: The reporting of this scoping review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). A systematic literature search of 5 electronic databases-Web of Science, PubMed, Scopus, Google Scholar, and OpenGrey-was conducted, searching from January 1, 1995, to February 8, 2023. In total, 2 independent reviewers first screened the retrieved articles by title and abstract, and then assessed the full texts based on the inclusion and exclusion criteria. The search strategy and eligibility criteria were developed and guided by an a priori population (office-based working adults), intervention (a PA WHP intervention that took a PR approach), comparison (no comparison required), and outcome (PA or SB) framework. Data were charted and discussed via a narrative synthesis, and a thematic analysis was conducted. The included studies were evaluated regarding the degree of end user engagement throughout the research process and power shared by the researchers, using Arnstein\'s ladder of citizen participation.
RESULTS: The search retrieved 376 records, of which 8 (2.1%) met the inclusion criteria. Four key strategies were identified: (1) end user focus groups, (2) management involvement, (3) researcher facilitators, and (4) workplace champions. The degree of engagement and power shared was relatively low, with 25% (2/8) of the studies determined to be nonparticipation studies, 25% (2/8) determined to be tokenistic, and 50% (4/8) determined to provide citizen power.
CONCLUSIONS: This review provides a foundation of evidence on the current practices when taking a PR approach, highlighting that previous office-based PA WHP studies have been largely tokenistic or nonparticipative, and identified that the end user is only engaged with in the conception and implementation of the WHP studies. However, a positive improvement in PA and reduction in SB were observed in the included studies, which were largely attributed to implementing a PR approach and including the end user in the design of the WHP intervention. Future studies should aim to collaborate with workplaces, building capacity and empowering the workforce by providing citizen control and letting the end users \"own\" the research for a sustainable WHP intervention.
UNASSIGNED: RR2-10.1136/bmjopen-2021-054402.

BACKGROUND: Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality.
METHODS: This rapid review was pre-registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer-reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE-II) Instrument. Data was analysed using descriptive analyses and narrative synthesis.
RESULTS: We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context-specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods.
CONCLUSIONS: This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods.
UNASSIGNED: Adolescent co-researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer-reviewed articles at the title and abstract screening stage and 10% at full-text screening stage. C. W. extracted data from 10% of the included guidelines. Both co-researchers reviewed and shared their feedback on the article and are co-authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review.

BACKGROUND: There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.
OBJECTIVE: To determine the strengths and limitations to using creative PPI methods in health and social care research.
METHODS: Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.
RESULTS: Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or \"taboo\" topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.
CONCLUSIONS: \'Creative PPI\' is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.
It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.

BACKGROUND: Dementia is a global public health challenge. Evidence suggests that individuals from South Asian communities are an at-risk group for dementia, partly as a result of early and cumulative exposure to known dementia risk factors, such as obesity and type 2 diabetes. There needs to be more culturally appropriate community engagement to increase awareness of dementia and identify better strategies to encourage participation in dementia-related research.
METHODS: We aimed to better understand the barriers and facilitators towards engaging with, and participating in, diet and dementia related research among British South Asians. This was achieved using a public and patient involvement (PPI) approach. A community-based, engagement event involving information sharing from experts and roundtable discussions with South Asian communities (n = 26 contributors) was held in June 2023 in Newcastle-upon-Tyne, UK. Collaboration from preidentified PPI representatives (n = 3) informed the content and structure of PPI activities, as well as recruitment. Data were synthesised using template analysis, a form of codebook thematic analysis. This involved deductively analysing data using relevant a priori themes, which were expanded upon, or modified, via inductive analysis.
RESULTS: The findings highlighted the importance of trust, representation and appreciation of cultural barriers as facilitators to engagement in diet and dementia risk reduction research. Consideration of language barriers, time constraints, social influences and how to embed community outreach activities were reported as driving factors to maximise participation.
CONCLUSIONS: This PPI work will inform the design and co-creation of a culturally adapted dietary intervention for brain health in accordance with the Medical Research Council and National Institute for Health and Care Research guidance for developing complex interventions.

Despite an increased recognition of the right of adolescents to be involved in decisions that affect them, young people continue to be under-involved in health research. One of the reasons is a lack of awareness among researchers on the current evidence base around the benefits of involving adolescents. To address this, we conducted an umbrella review to synthesize the evidence on the positive impacts of adolescent involvement in health research. This umbrella review was preregistered with PROSPERO (CRD42021287467). We searched 11 databases, Google Scholar, PROSPERO, reference lists, 10 journals, websites of 472 organizations, and sought input from experts. Ultimately, we included 99 review articles. We found that adolescent involvement has many positive impacts on young people, including increased knowledge and skills; personal development; financial benefits; career and academic growth; enhanced relationships; and valuing their experience. The positive impacts of adolescent involvement on the research itself include increased relevance of the study to adolescents, improved recruitment, development of more adolescent-friendly materials, enhanced data collection and analysis, and more effective dissemination. Researchers also benefited from adolescents\' involvement through increased knowledge, skills, and a shift in their attitudes. The evidence supporting the positive impacts of adolescent involvement in research is substantial but limited by a lack of rigorous evaluation, inconsistent reporting, and unclear evaluation methods.