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Introduction: Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results: Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion: Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review. [ABSTRACT FROM AUTHOR]

Introduction: For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit. Methods: We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real‐life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. Results: We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions 'Patient‐clinician collaboration: content' (N = 396, 32%) and 'Patient‐clinician collaboration: manner' (N = 382, 31%) and the least related to 'Ongoing and iterative process' (N = 22, 2%) and in 'Minimally disruptive of patient lives' (N = 29, 2%). The items referred to 27 specific actions. Most items referred to 'Informing' (N = 308, 25%) and 'Exploring' (N = 93, 8%), the fewest items referred to 'Following up', 'Comforting' and 'Praising' (each N = 3, 0.2%). Discussion: Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. Patient Contribution: Patients and caregivers from the 'Making care fit Collaborative' were involved in drafting the dimensions relevant to patient–clinician collaboration. [ABSTRACT FROM AUTHOR]

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Introduction: We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life‐changing event from the perspectives of individuals experiencing the event and their families. Methods: We searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life‐changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. Title and abstract and full‐text screening were undertaken independently by two reviewers. Data extraction and quality appraisal were conducted by one reviewer and checked by a second. We used a best‐fit framework synthesis approach, drawing upon procedural and restorative justice concepts. Findings: Fifty‐three studies (61 papers) were eligible for inclusion. Forty‐one studies (47 papers) were included in the synthesis, from which we identified four themes. Three themes 'Transparency', 'Person‐centered' and 'Trustworthy' represent the procedural elements required to support a fair and objective process. The fourth, 'Restorative justice' encapsulates how a fair process feels to those who have experienced a life‐changing event. This theme highlights the importance of an empathic relationship between the different parties involved in the redress‐reconciliation process and the significance of being able to engage in meaningful action. Conclusion: Our findings highlight the procedural aspects and context of redress‐reconciliation processes required to ensure that the process and outcomes are experienced as fair. These criteria may be applied to the processes used to investigate both recent and historical patient safety events. Public Contribution: One member of the public affiliated with the Exeter Policy Research Programme Evidence Review Facility helped develop the review protocol. Two people with experience of medically life‐changing events provided insight which corroborated our findings and identified important limitations of the evidence included in this review. [ABSTRACT FROM AUTHOR]

Background: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross‐sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. Objective: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. Results: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. Conclusions: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co‐create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. Patient or Public Contribution: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. Clinical Trial Registration: Not applicable. [ABSTRACT FROM AUTHOR]

Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Introduction: Risk‐stratified cancer screening has the potential to improve resource allocation and the balance of harms and benefits by targeting those most likely to benefit. Public acceptability has implications for engagement, uptake and the success of such a programme. Therefore, this review seeks to understand whether risk stratification of population‐based cancer screening programmes is acceptable to the general public and in what context. Methods: Four electronic databases were searched from January 2010 to November 2021. Qualitative, quantitative and mixed‐methods papers were eligible for inclusion. The Joanna Briggs Institute convergent integrated approach was used to synthesize the findings and the quality of included literature was assessed using the Mixed Methods Appraisal Tool. The Theoretical Framework of Acceptability was used as a coding frame for thematic analysis. PROSPERO record 2021 CRD42021286667. Results: The search returned 12,039 citations, 22 of which were eligible for inclusion. The majority of studies related to breast cancer screening; other cancer types included ovarian, kidney, colorectal and prostate cancer. Risk stratification was generally acceptable to the public, who considered it to be logical and of wider benefit than existing screening practices. We identified 10 priorities for implementation across four key areas: addressing public information needs; understanding communication preferences for risk estimates; mitigating barriers to accessibility to avoid exacerbating inequalities; and the role of healthcare professionals in relation to supporting reduced screening for low‐risk individuals. Conclusion: The public generally find risk stratification of population‐based cancer screening programmes to be acceptable; however, we have identified areas that would improve implementation and require further consideration. Patient or Public Contribution: This paper is a systematic review and did not formally involve patients or the public; however, three patient and public involvement members were consulted on the topic and scope before the review commenced. [ABSTRACT FROM AUTHOR]

Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co‐design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods: The PPIE partnership was set up in four stages: 1–identifying communities that have been under‐represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co‐design activities in an equitable fashion. Results: To address under‐representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co‐design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co‐design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co‐authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co‐authors. [ABSTRACT FROM AUTHOR]

Background: Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory‐building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. Methods: Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February 2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta‐Analyses) 2020 Statement. Results: Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power‐focused (n = 8), process‐focused (n = 7), impact‐focused (n = 3) and equity‐focused (n = 2). Few frameworks (n = 5) were empirically tested in health‐related research. Conclusions: The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. Patient or Public Contribution: Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid‐20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth‐led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production is gaining increasing recognition as a good way of facilitating collaboration among different stakeholders, including members of the public. However, it remains an ambiguous concept as there is no definitive or universal model of co‐production or clarity on what constitutes a good co‐production approach. This paper draws on the reflections of the academic researchers, practitioners and public advisors involved in co‐producing a priority‐setting exercise. The exercise was conducted by the Primary and Community Health Services (PCHS) Theme of the National Institute for Health and Care Research Applied Research Collaboration for Kent, Surrey and Sussex (NIHR ARC KSS). Methods: We collected data through written and verbal reflections from seven collaborators involved in the PCHS priority‐setting exercise. We used Gibbs' model of reflection to guide the data collection. We then analysed the data through an inductive, reflexive thematic analysis. Results: A common thread through our reflections was the concept of 'sharing'. Although co‐production is inherently shared, we used the virtuous cycle to illustrate a sequence of sharing concepts during the research cycle, which provides the underpinnings of positive co‐production outcomes. We identified six themes to denote the iterative process of a shared approach within the virtuous cycle: shared values, shared understanding, shared power, shared responsibilities, shared ownership and positive outcomes. Conclusion: Our results present a virtuous cycle of co‐production, which furthers the conceptual underpinnings of co‐production. Through our reflections, we propose that positive co‐production outcomes require foundations of shared values and a shared understanding of co‐production as a concept. These foundations facilitate a process of shared power, shared responsibilities and shared ownership. We argue that when these elements are present in a co‐production exercise, there is a greater potential for implementable outcomes in the communities in which the research serves and the empowerment of collaborators involved in the co‐production process. Public Members' Contributions: Three members of the public who are public advisors in the NIHR ARC KSS were involved in the priority‐setting exercise that informed this paper. The public advisors were involved in the design of the priority‐setting exercise and supported participants' recruitment. They also co‐facilitated the focus groups during data collection and were involved in the data analysis, interpretation and preparation of the priority‐setting report. For this current manuscript, two of them are co‐authors. They provided reflections and contributed to the writing and reviewing of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Involving consumers in systematic reviews can make them more valuable and help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. Methods: This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectives but also reflecting on these together to identify key learning points. Results: The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two‐way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Conclusions: Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiences if contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group‐specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Patient and Public Contribution: Public contributors were collaborators throughout the evaluation process and have co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: Arts‐based methodologies and methods (ABM) can elicit rich and meaningful data with seldom‐heard groups and empower participants in research. Young people with complex psychosocial needs could be better engaged in research using arts‐based approaches to overcome communication and literacy issues as well as distrust of those with power, including researchers. A critical review of the use and impact of ABM among this population is timely. The purpose of this review is to synthesize and examine the experience and use of ABM with young people with complex psychosocial needs. Methods: A systematic narrative literature review was conducted with a search of the literature from 2009 to 2021. All abstracts were reviewed independently by two authors and full papers were screened for eligibility against inclusion and exclusion criteria. Data synthesis focused on a descriptive numerical summary and a thematic analysis focused on key patterns across papers relating to the review objectives. Results and Discussion: A total of 25 papers were included. The most common issues of focus were mental health (n = 10) and homelessness (n = 11) and methods using Photovoice (n = 12) and Body Mapping (n = 5). Individual interview data (n = 20) were the most commonly analysed, followed by created works (n = 19). Less than half the studies involved young people in the interpretation of the data collected. Knowledge translation was not described in almost half the studies, with public exhibits (n = 7) and forums with service providers (n = 4) being the most common activities. Key themes across the studies were valued over traditional methods in eliciting data, ABM as an approach to engage these young people in research and the impact of the use of ABM on participants and on key stakeholders through knowledge translation. Conclusions: The growing field of ABM presents opportunities to enhance research with young people with complex psychosocial needs by promoting meaningful exploration of experiences, engaging participants in research and strengthening knowledge translation. The involvement of young people in the interpretation of data and ensuring that knowledge translation occurs are key areas for future attention. Patient or Public Contribution: The findings of this review will inform future research to improve the engagement of young people with complex psychosocial needs in research and promote power sharing between researchers and research participants. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Objective: This article addresses the persistent challenge of Delayed Hospital Discharge (DHD) and aims to provide a comprehensive overview, synthesis, and actionable, sustainable plan based on the synthesis of the systematic review articles spanning the past 24 years. Our research aims to comprehensively examine DHD, identifying its primary causes and emphasizing the significance of effective communication and management in healthcare settings. Methods: We conducted the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐ScR) method for synthesizing findings from 23 review papers published over the last two decades, encompassing over 700 studies. In addition, we employed a practical and comprehensive framework to tackle DHD. Rooted in Linderman's model, our approach focused on continuous process improvement (CPI), which highlights senior management commitment, technical/administrative support, and social/transitional care. Our proposed CPI method comprised several stages: planning, implementation, data analysis, and adaptation, all contributing to continuous improvement in healthcare delivery. This method provided valuable insights and recommendations for addressing DHD challenges. Findings: Our DHD analysis revealed crucial insights across multiple dimensions. Firstly, examining causes and interventions uncovered issues such as limited discharge destinations, signaling unsustainable solutions, and inefficient care coordination. The second aspect explored the patient and caregiver experience, emphasizing challenges linked to staff uncertainty and negative physical environments, with notable attention to the underexplored area of caregiver experience. The third theme explored organizational and individual factors, including cognitive impairment and socioeconomic influences. The findings emphasized the importance of incorporating patients' data, recognizing its complexity and current avoidance. Finally, the role of transitional and social care and financial strategies was scrutinized, emphasizing the need for multicomponent, context‐specific interventions to address DHD effectively. Conclusion: This study addresses gaps in the literature, challenges prevailing solutions, and offers practical pathways for reducing DHD, contributing significantly to healthcare quality and patient outcomes. The synthesis introduces the vital CPI stage, enhancing Linderman's work and providing a pragmatic framework to eradicate delayed discharge. Future efforts will address practitioner consultations to enhance perspectives and further enrich the study. Patient or Public Contribution: Our scoping review synthesizes and analyzes existing systematic review articles and emphasizes offering practical, actionable solutions. While our approach does not directly engage patients, it strategically focuses on extracting insights from the literature to create a CPI framework. This unique aspect is intentionally designed to yield tangible benefits for patients, service users, caregivers, and the public. Our actionable recommendations aim to improve hospital discharge processes for better healthcare outcomes and experiences. This detailed analysis goes beyond theoretical considerations and provides a practical guide to improve healthcare practices and policies. [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [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]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [ABSTRACT FROM AUTHOR]

Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]

Introduction: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex‐users, family members of ex‐users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. Method: The study investigated the experience of 35 EbEs, users, and family members who carried out a 9‐month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. Results: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. Conclusions: EbEs have proven to be key figures in ensuring equity of role in the service co‐design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. Patient or Public Contribution: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: This paper aims to explore the impact of recovery education on recovery knowledge, attitudes and the quality of life of students undertaking recovery education, contributing to the evidence base in relation to the impact of recovery education. It also explores the experiences of all stakeholders involved in the co‐facilitation, delivery and participation in recovery education. Setting and Participants: This study evaluates the experiences of stakeholders involved in the co‐facilitation, delivery and participation in recovery education across four recovery colleges in Ireland. Participants included students undertaking recovery education, peer educators, education facilitators, recovery college coordinators and practitioner/service providers. Discussion: Findings from the quantitative survey when compared with extant literature suggest that students had a good understanding of recovery education. The social aspect of empowerment for growth and wellbeing was identified through themes relating to co‐production and facilitating student learning. Support for equitable access to recovery education, including co‐production for both the public and staff, was identified as a challenge for the future. Conclusion: The findings from both the qualitative and quantitative components of the study show the positive impact of recovery education on stakeholders while acknowledging the need for ongoing support for people working in recovery education and the development of services. In particular, there was a high level of recovery knowledge found in students undertaking recovery education. Patient or Public Contribution: This study utilised a co‐created study design. From inception a steering group comprising stakeholders (peer educators, recovery education facilitators including past recovery college students and nonpeer staff involved in the co‐production of recovery education) directed the conduct of the evaluation. This steering group participated in an iterative process of information sharing, suggestions for evaluation process and language. [ABSTRACT FROM AUTHOR]

Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non‐invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision‐making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision‐making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or Public Contribution: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs). [ABSTRACT FROM AUTHOR]

Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain—organized in a separate work package—included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. Methods: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. Results: Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. Conclusion: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. Public Contribution: Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration. [ABSTRACT FROM AUTHOR]

Background: Co‐design is becoming common practice in the development of mental health services, however, little is known about the experience of such practices, particularly when young people are involved. Objective: The aim of this study was to conduct a process evaluation of the co‐design which was undertaken for the development of an intervention for youth and adolescents at risk of suicide. This paper briefly outlines the co‐design process undertaken during a COVID‐19 lockdown and then focuses on a qualitative evaluation of the experience of taking part in a co‐design process. Setting and Participants: The evaluation involved young consumers of a public youth mental health service, their carers/parents and service delivery staff who had taken part in the co‐design process. Method: This study used follow‐up semistructured interviews with the co‐design participants to explore their experience of the co‐design process. Inductive thematic analysis was used to draw out common themes from the qualitative data. Results: It was found that despite the practical efforts of the project team to minimise known issues in co‐design, challenges centred around perceptions regarding power imbalance, the need for extensive consultation and time constraints still arose. Discussion: Despite these challenges, the study found that the co‐design provided a human‐centred, accessible and rewarding process for young people, parents and staff members, leaving them with the feeling that they had made a worthwhile contribution to the design of the new service, as well as contributing to changing practice in service design. Conclusion: With sensitivity and adaptation to usual practice, it is possible to include young people with suicidal ideation, their parents/carers and professional staff in a safe and effective co‐design process. Patient and Public Contribution: The authors would like to thank and acknowledge the young people with a lived experience and their carers who participated in the co‐design process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in this research. [ABSTRACT FROM AUTHOR]

Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Objectives: To explore the perceptions of patients and healthcare professionals on Raman‐faecal immunochemical test (FIT) as an alternative test for colorectal cancer exclusion in primary care. Design: Semi‐structured interviews within a feasibility study. Setting: Patients presenting to primary care with colorectal symptoms and healthcare professionals working in primary and secondary care. Participants: A total of 23 patients and 12 healthcare professionals. Methods: Patient participants were asked to complete a novel combined Raman‐FIT test before being seen in secondary care. This study sought their opinions about the test. We also sought the views of healthcare professionals. Findings: Patients and healthcare professionals agreed that Raman‐FIT was a suitable test to be given in primary care. It aligned with routine practice and was a simple test for most patients to complete. Conclusions: Patients are willing and able to complete the Raman‐FIT test in primary care. Raman‐FIT may accelerate access to diagnosis with the potential to improve cancer outcomes. Patient and Public Involvement: Lay members (J. H. and I. H.) with experience and knowledge of colorectal cancer and screening contributed to developing, undertaking, and disseminating all aspects of the research. They were supported to collaborate as equal members of the research team. They were involved in developing the study as coapplicants, using personal experience to ensure that the research and its methods were relevant to the patient and public needs. Both prepared participant information sheets, coanalysed data, and contributed to study reporting and dissemination through papers, conference presentations and a lay summary. [ABSTRACT FROM AUTHOR]

Introduction: Involving service users in health service design and delivery is considered important to improve the quality of healthcare because it ensures that the delivery of healthcare is adapted to the needs of the users. Co‐production is a process used to involve service users, but multiple papers have highlighted the need for the mechanisms and values guiding co‐production to be more clearly stated. The aim of this paper was to evaluate the mechanisms and values that guided the co‐production approach of the Stories for Change project, which used Public Narrative as part of the co‐design process to create change in National Health Service maternity services. Methods: This study was conducted using a rapid feedback evaluation approach. Semistructured interviews (n = 16) were the main source of data, six of which were maternity service users, with observations (5 h) and documentary analysis also carried out in parallel. RREAL sheets were used for data analysis to organize data based on key topics of interest. Results: This study identified three broad mechanisms and values underpinning the co‐production approach: creating an open and safe space to share ideas, learning how to tell stories using Public Narrative and having service providers who play a key role in strengthening the health system listen to stories compelling them to action. This study identified the main areas for improvement of the Stories for Change project related to recruitment, the inclusion of participants, the co‐design process, the Skills Session and the Learning Event. Conclusion: Our study provided a deeper understanding of the co‐production approach that addresses the need to uncover the mechanism and values underlying co‐production and co‐design approaches. This study expands on the literature pertaining to the influence of storytelling in creating meaningful change in health care. We propose a co‐design methodology that uses Public Narrative as a model for service user engagement to help inform future healthcare development processes. Patient or Public Contribution: The experiences and perceptions of maternity service users and health professionals informed this evaluation. The project organizers were involved in the manuscript preparation stage by providing feedback, and service users wrote a commentary on the project from the lived experience perspective. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co‐producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. Methods: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot‐testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. Results: The co‐production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. Conclusions: This study investigated the process of co‐producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot‐test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co‐production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. Public Contribution: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co‐author. [ABSTRACT FROM AUTHOR]

Introduction: Approximately 20% of people with a long‐term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design. Methods: Through a co‐produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical‐realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns. Results: Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs. Conclusion: Despite the negative impact(s) of having a long‐term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co‐produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms. Patient or Public Contribution: This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co‐produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer‐to‐peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental–physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co‐produced study documents, topic guides, and informed key decision‐making processes. Finally, our co‐investigator with lived experience (E. A.F.) undertook the analysis and write‐up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs. [ABSTRACT FROM AUTHOR]

Context: Patient experience is an important component of high‐quality care and is linked to improved clinical outcomes across a range of different conditions. Patient‐reported experience measures (PREMs) are psychometrically validated instruments designed to identify where strengths and vulnerabilities in care exist. Currently, there is no validated instrument available to measure patient experience among people aged over 65 years attending the emergency department (ED). Objective: This paper aims to describe the process of generating, refining and prioritising candidate items for inclusion in a new PREM measuring older adults' experiences in ED (PREM‐ED 65). Design: One hundred and thirty‐six draft items were generated via a systematic review, interviews with patients and focus groups with ED staff exploring older adults' experiences in the ED. A 1‐day multiple stakeholder workshop was then convened to refine and prioritise these items. The workshop entailed a modified nominal groups technique exercise comprised of three discrete parts—(i) item familiarisation and comprehension assessment, (ii) initial voting and (iii) final adjudication. Setting and Participants: Twenty‐nine participants attended the stakeholder workshop, conducted in a nonhealthcare setting (Buckfast Abbey). The average age of participants was 65.6 years. Self‐reported prior experiences of emergency care among the participants included attending the ED as a patient (n = 16, 55.2%); accompanying person (n = 11, 37.9%) and/or as a healthcare provider (n = 7, 24.1%). Results: Participants were allocated time to familiarise themselves with the draft items, suggest any improvements to the item structure or content, and suggest new items. Two additional items were proposed by participants, yielding a total of 138 items for prioritisation. Initial prioritisation deemed most items 'critically important' (priority 7–9 out of 9, n = 104, 75.4%). Of these, 70 items demonstrated suitable inter‐rater agreement (mean average deviation from the median < 1.04) and were recommended for automatic inclusion. Participants then undertook final adjudication to include or exclude the remaining items, using forced choice voting. A further 29 items were included. Thirty‐nine items did not meet the criteria for inclusion. Conclusions: This study has generated a list of 99 prioritised candidate items for inclusion in the draft PREM‐ED 65 instrument. These items highlight areas of patient experience that are particularly important to older adults accessing emergency care. This may be of direct interest to those looking to improve the patient experience for older adults in the ED. For the final stage of development, psychometric validation amongst a real‐world population of ED patients is now planned. Patient and Public Contribution: Initial item generation was informed using qualitative research, including interviews with patients in the ED. The opinions of patients and members of the public were integral to achieving outcomes from the prioritisation meeting. The lay chair of the Royal College of Emergency Medicine participated in the meeting and reviewed the results of this study. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient‐centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. Aim: Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. Methods: Based on a participatory action research design and the patient engagement framework in the Strategy for Patient‐Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. Results: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six‐step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. Conclusion: This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. Patient or Public Contribution: All patient partners from the PriCARE programme were actively involved in the six‐step approach. They were also involved in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background: People with lived‐experience of the phenomenon under investigation are seldom involved in the analysis of qualitative data, and there exists little guidance for those wishing to involve contributors at this stage of research. Aims: To critically reflect on the process of involving people with lived‐experience in a thematic analysis and to offer direction to other researchers. Methods: An individual with lived‐experience of residing in prison contributed to a co‐analysis of qualitative data using thematic analysis. This paper reports on involvement at each stage of a thematic analysis and follows an established reporting checklist. Results: A number of challenges and benefits were encountered in the process of co‐analysing the data. These are discussed in relation to previous research and how to overcome the challenges encountered. Conclusions: The paper concludes by giving recommendations and guidance for future researchers wishing to involve people with lived‐experience in qualitative data analysis. [ABSTRACT FROM AUTHOR]

Background: Psychiatric rehospitalization is a complex phenomenon in need of more person‐centred approaches. The current paper aimed to explore how community‐based actions and daily life influence mental health and rehospitalization. Design, setting and participants: The qualitative study included focus group data from six European countries including 59 participants. Data were thematically analysed following an inductive approach deriving themes and subthemes in relation to facilitators and barriers to mental health. Results: Barriers consisted of subthemes (financial difficulty, challenging family circumstances and stigma), and facilitators consisted of three subthemes (complementing services, signposting and recovery). The recovery subtheme consisted of a further five categories (family and friends, work and recreation, hope, using mental health experience and meaning). Discussion: Barriers to mental health largely related to social determinants of mental health, which may also have implications for psychiatric rehospitalization. Facilitators included community‐based actions and aspects of daily life with ties to personal recovery. By articulating the value of these facilitators, we highlight benefits of a person‐centred and recovery‐focused approach also within the context of psychiatric rehospitalization. Conclusions: This paper portrays how person‐centred approaches and day‐to‐day community actions may impact psychiatric rehospitalization via barriers and facilitators, acknowledging the social determinants of mental health and personal recovery. Patient or public contribution: The current study included participants with experience of psychiatric rehospitalization from six different European countries. Furthermore, transcripts were read by several of the focus group participants, and a service user representative participated in the entire research process in the original study. [ABSTRACT FROM AUTHOR]

Background: We report on a study of a facilitated interactive group learning approach, through Collaborative Implementation Groups (CIGs), established to enhance capacity for equity‐sensitive evaluation of healthcare services to inform local decision‐making: (1) What was the experience of participants of the CIGs? (2) How was knowledge mobilisation achieved? (3) What are the key elements that enhance the process of coproducing equity‐sensitive evaluations? Methods: A thematic analysis of qualitative data obtained from focus group (FG) discussions and semistructured interviews exploring the experiences of participants. All FGs included representation of participants from different projects across the programme. Interviews were conducted with a member from each of the teams participating in the first cohort after their final workshop. Results: We identified four themes to illustrate how the approach to delivering intensive and facilitated training supported equity‐sensitive evaluations of local healthcare services: (1) Creating the setting for coproduction and knowledge mobilisation; (2) establishing a common purpose, meaning and language for reducing health inequalities; (3) making connections and brokering relationships and (4) challenging and transforming the role of evaluation. Conclusion: We report on the implementation of a practical example of engaged scholarship, where teams of healthcare staff were supported with resources, interactive training and methodological advice to evaluate their own services, enabling organisations to assemble timely practical and relevant evidence that could feed directly into local decision‐making. By encouraging mixed teams of practitioners, commissioners, patients, the public and researchers to work together to coproduce their evaluations, the programme also aimed to systematise health equity into service change. The findings of our study illustrate that the approach to delivering training gave participants the tools and confidence to address their organisation's stated aims of reducing health inequalities, coproduce evaluations of their local services and mobilise knowledge from a range of stakeholders. Patient or Public Contribution: The research question was developed collaboratively with researchers, partner organisations and public advisers (PAs). PAs were involved in meetings to agree on the focus of this research and to plan the analysis. N. T. is a PA and coauthor, contributing to the interpretation of findings and drafting of the paper. [ABSTRACT FROM AUTHOR]

Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. [ABSTRACT FROM AUTHOR]

Objectives: The global coronavirus disease 2019 (COVID‐19) pandemic has not been well controlled, and vaccination could be an effective way to prevent this pandemic. By accommodating attribute nonattendance (ANA) in a discrete choice experiment (DCE), this paper aimed to examine Chinese public preferences and willingness to pay (WTP) for COVID‐19 vaccine attributes, especially the influence of ANA on the estimated results. Methods: A DCE was designed with four attributes: effectiveness, protection period, adverse reactions and price. A random parameter logit model with an error component (RPL‐EC) was used to analyse the heterogeneity of respondents' preferences for COVID‐19 vaccine attributes. Two equality constraint latent class (ECLC) models were used to consider the influence of ANA on the estimated results in which the ECLC‐homogeneity model considered only ANA and the ECLC‐heterogeneity model considered both ANA and preference heterogeneity. Results: Data from 1,576 samples were included in the analyses. Effectiveness had the highest relative importance, followed by adverse reactions and protection period, which were determined by the attributes and levels presented in this study. The ECLC‐heterogeneity model improved the goodness of fit of the model and obtained a lower probability of ANA. In the ECLC‐heterogeneity model, only a small number of respondents (29.09%) considered all attributes, and price was the most easily ignored attribute (64.23%). Compared with the RPL‐EC model, the ECLC‐homogeneity model obtained lower WTPs for COVID‐19 vaccine attributes, and the ECLC‐heterogeneity model obtained mixed WTP results. In the ECLC‐heterogeneity model, preference group 1 obtained higher WTPs, and preference groups 2 and 3 obtained lower WTPs. Conclusions: The RPL‐EC, ECLC‐homogeneity and ECLC‐heterogeneity models obtained inconsistent WTPs for COVID‐19 vaccine attributes. The study found that the results of the ECLC‐heterogeneity model considering both ANA and preference heterogeneity may be more plausible because ANA and low preference may be confused in the ECLC‐homogeneity model and the RPL‐EC model. The results showed that the probability of ANA was still high in the ECLC‐heterogeneity model, although it was lower than that in the ECLC‐homogeneity model. Therefore, in future research on DCE (such as the field of vaccines), ANA should be considered as an essential issue. Public Contribution: Chinese adults from 31 provinces in mainland China participated in the study. All participants completed the COVID‐19 vaccine choice questions generated through the DCE design. [ABSTRACT FROM AUTHOR]

Objective To conduct a systematic appraisal of the published literature reviews related to the impact of cancer on everyday life. This theme was identified as the top priority area for research by participants in the Macmillan Listening Study, which was the first UK-wide public consultation exercise to identify patients' priorities for cancer research. Search strategy The top priority area was divided into ten sub-themes, and a modified systematic review was undertaken for each sub-theme using electronic searches. Inclusion criteria Literature review papers were included if they were written in English, involved patients diagnosed ≥18 years, any cancer types and published between 2000 and 2006. Data extraction and synthesis Two thousand and two hundred and fifty-two potentially eligible papers were identified. Abstracts were read by the first author and selected for inclusion in the review. Twenty percentages of the papers were also read independently by other authors. Sixty-two review papers were finally selected. Main results The systematic appraisal revealed that some sub-themes of the patient-identified priority area (e.g., how to support family members of cancer patients) were under-researched, while other sub-themes (e.g., anxiety and depression experienced by cancer patients) had been explored to some extent. Certain areas of research interest to patients were found to have been explored; however, their significance was limited by the quality of the research. Conclusion The systematic appraisal highlights important areas for future research and the need for more effective dissemination of study findings to wider audiences, including service users. This study also indicates the need for further research to enhance the generalizability and/or significance of findings. [ABSTRACT FROM AUTHOR]

Background: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health ‐ care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings: Twenty ‐ six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co ‐ governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co ‐ governance and dissemination of research processes and findings. [ABSTRACT FROM AUTHOR]

Introduction: To increase the likelihood of research responding to societal needs, intermediary structures such as Science Shops are being created. Science Shops respond to research needs identified and prioritized through participatory processes involving civil society. However, these are not mainstream structures, and most research needs addressed by the scientific community are not defined by a diversity of stakeholders (including citizens) but are mostly prioritized by researchers and funders. Literature shows this often leads to bias between the research topics investigated and the research needs of other relevant stakeholders. This study analyses how 14 Science Shops contribute to decreasing bias in health research agenda setting. Methodology: We compare the research priorities identified through participatory processes by the Science Shops, which participated in the European Union‐funded project InSPIRES (2017–2021), to the available research addressed in the literature (identified in Web of Science), which we use as a proxy for current research priorities. Results: Science Shop projects contributed to decreasing the existing bias in health research agenda setting: (1) between drug and nondrug treatments and (2) between clinical trials of treatments for illnesses affecting high‐income versus middle‐ and low‐income countries, which leads to a lack of local strategies for high disease burdens in nonhigh‐income regions. Conclusion: This study provides the first evidence of Science Shops' effectiveness in addressing current biases in health research agenda setting. We conclude they could play a key role in shaping local, national and international research policies. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]