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

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

The main aim of this paper is to explore and discuss the interesting juxtaposition of patient involvement within a standardised Enhanced Recovery After Surgery care programme (ERAS). We address our aim by examining the work and strategies of nursing staff caring for patients during postoperative recovery from surgery, exploring how these two potentially competing priorities might effectively co‐exist within a hospital ward. This was a qualitative exploratory study, with data generated through 42 semi‐structured interviews with patients and nurses who had taken part in an ERAS programme in one of three hospital wards in the United Kingdom, adopting a reflexive thematic approach to data analysis. We shine a light on the work undertaken by patients and nurses during the navigation of postoperative recovery, identifying strategies of collaboration and negotiation during this journey. Furthermore, we also identify and consider patients engaged in peer‐peer support during postoperative recovery. This paper adds to the existing literature and current ways of thinking in relation to the quest for standardised, clinically effective care balanced with the aspirations for individualised, patient‐centred care. This paper also helps inform thinking about the use of care pathways in relation to service delivery, considering how best to initiate and deploy best practice aimed at safe and effective postoperative recovery. [ABSTRACT FROM AUTHOR]

Through the creation of safe spaces in which to explore and challenge dominant negative views of disabled children and young people, this co‐written paper presents unique insight into the meaning and impact upon disabled young people's lives of medical lenses and deficit models of disability. Bodies of work and dominant debates in medical sociology, disability studies and childhood studies have so far largely overlooked the experiences and positioning of disabled children and young people and have rarely involved them in the development or discussion of theory. Drawing on empirical data, and through a series of creative, reflective workshops with a UK‐based disabled young researchers' collective (RIP:STARS), this paper discusses areas of theoretical importance identified by the disabled young researcher collective—the validation of their lives, negotiation of their identity and acceptance in society. The implications, and possibilities, of platforming disabled children and young people's voices in theoretical debates are deliberated and are achieved through the yielding of privileged academic voice and the development of a symbiotic, genuine partnership which resonates with disabled young people and recognises them as experts in their own lives. [ABSTRACT FROM AUTHOR]

Background: In Britain's National Health Service (NHS), medical consumerism is disliked by many doctors but managed by NHS leaders. Managed consumers have choices about treatment options, but are expected to help contain costs, improve quality of care, take part in clinical research and advocacy, and increase productivity. There are so many meanings for medical consumerism that it can be categorized, in post‐structuralist terms, as a 'symbol without meaning', but meanings are plentiful in the NHS. Policy expectations: Choices made by discriminating consumers were expected to improve the quality of medical care for all. Extending choice to the many, and not restricting options to the few, would allow gains from choices to accumulate, so that choice would sustain social solidarity. Managed consumerism would in theory, therefore, instil reasonable choices and responsible behaviours in a moralized citizenry, across the nation. The advocates of New Labour's espousal of medical consumerism expected the accumulative effects of customer choices to challenge professional and occupational power, erode the medical model of health and illness, constrain professional judgements, and open the NHS to new ways of working. Almost all their expectations have been thwarted, so far. Conclusions: Managed consumerism is far from being a meaningless symbol. This discussion paper explores the territory of managed consumerism and suggests realistic ways to make it more effective in shaping the NHS. Patient & Public Contribution: We developed the arguments in this discussion paper with insights provided by a lay expert (see Acknowledgements) with experience of consumerism in both public sector management and a disease‐related charity. [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]

Aims: The aims of this project were to establish the outcomes for dental implant research that are important to people with lived experience (PWLE) and to achieve consensus with those developed by dental professionals (DPs) for a core outcome set (COS). This paper reports the process, outcomes and experiences of involving PWLE in developing a COS for dental implant research: the Implant Dentistry Core Outcome Sets and Measures project. Materials and Methods: Overall methods were guided by the Core Outcome Set Measures in Effectiveness Trials (COMET) initiative. Initial outcome identification was achieved from focus groups with PWLE employing calibrated methods across two low‐middle‐income countries (China and Malaysia) and two high‐income countries (Spain and the United Kingdom). Following consolidation of the results, the outcomes were incorporated into a three‐stage Delphi process with PWLE participation. Finally, consensus between PWLE and DPs was achieved using a mixed live and recorded platform. The experiences of PWLE involvement in the process was also evaluated. Results: Thirty‐one PWLE participated in four focus groups. Thirty‐four outcomes were suggested across the focus groups. Evaluation of the focus groups revealed a high level of satisfaction with the engagement process and some new learning. Seventeen PWLE contributed to the first 2 Delphi rounds and 7 to the third round. The final consensus included 17 PWLE (47%) and 19 DPs (53%). Out of the total of 11 final consensus outcomes considered essential by both PWLE and health professionals, 7 (64%) outcomes mapped across to ones that PWLE initially identified, broadening their definition. One outcome (PWLE effort required for treatment and maintenance) was entirely novel. Conclusions: We conclude that engaging PWLE in COS development can be achieved across widely different communities. Furthermore, the process both broadened and enriched overall outcome consensus, yielding important and novel perspectives for health‐related research. [ABSTRACT FROM AUTHOR]

Background: The concept of service user involvement is an evolving concept in the mental health‐care literature. Objective: This study sought to explore and analyse the concept of service user involvement as used in within the field of mental health care. Methodological approach: An evolutionary concept analysis was conducted using a literature‐based sample extracted from an electronic database search. One hundred and thirty‐four papers met the inclusion criteria and were analysed to discover key attributes, antecedents and consequences of service user involvement and to produce a definition of the concept. Findings: Five key attributes of service user involvement within the context of mental health care were identified: a person‐centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership. Discussion and conclusions: Clarity of the attributes and definition of the concept of service user involvement aims to promote understanding of the concept among key stakeholders including mental health professionals, service users and community and voluntary organizations. The findings of the research have utility in the areas of theory and policy development, research on service user involvement in mental health care and service user involvement in mental health practice. Directions for further research regarding the concept are identified. [ABSTRACT FROM AUTHOR]

Background Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively. Objective To design a search filter to identify literature where patient and public involvement ( PPI) was used in health research. Methods A reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review. Results The search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a 'real-life' systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%. Conclusion The PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI. [ABSTRACT FROM AUTHOR]

Background: CBT is an effective treatment for depression, but access varies across the United Kingdom. Online CBT increases access. The INTERACT platform was designed to support patient engagement in CBT, enabling therapists to deliver high‐intensity CBT via typed instant messaging and allowing patients and therapists access to an integrated online library of resources during and between sessions. Methods: The INTERACT trial aimed to evaluate this integrated approach to delivering CBT for primary care patients with depression. A nested qualitative study was conducted within the trial. Interviews were conducted with 20 patients who received the intervention, 9 therapists who delivered it and 3 therapist supervisors. Data were analysed using thematic analysis. Results: The combination of receiving support from a therapist and having access to integrated online CBT resources enabled patients to better manage their depression. Platform benefits included the opportunity to review transcripts to clarify how to complete homework tasks and track progress in managing their depression. The typing process allowed reflection and a focused discussion. However, less could be covered than during an in‐person session, which reduced therapists' expectations around goal setting. Patients who did not complete therapy struggled with the typing and found the CBT approach too demanding. Conclusion: Findings highlight the importance of establishing patient and therapist goals and expectations about what can be achieved in CBT mediated by typing. Some patients are comfortable communicating via typing and are motivated to utilise online resources in between sessions. Exploring the benefits and challenges of typed CBT with patients will enable them to make an informed choice about referral for this novel approach to therapy. Patient or Public Contribution: Patients, service users and members of the public were involved in the study design and management. Substantial pilot work gathered stakeholder feedback and informed the design of the intervention, before undertaking the RCT. Coauthor P.L. is a service user representative co‐applicant and member of the management group responsible for developing the intervention and the trial. Two PPI members sit on the Independent Steering Committee. PPI members provided valuable feedback on the study resources and documents. [ABSTRACT FROM AUTHOR]

Introduction: People experiencing homelessness (PEH) have poorer health than housed people but face barriers accessing care and being involved in research. As an often‐ignored group, their contribution to help shape research that is for and about them is essential, as it can strengthen the research proposal, in turn facilitating research and outcomes that are relevant to this vulnerable group. Methods: Six people with experience of homelessness attended a PPI consultation aided by Pathway, a UK homeless peer advocacy charity, which coordinates an 'Experts by Experience' group. We present reflections on conducting PPI with PEH that informed the development of a physiotherapy research proposal. Kolb's Experiential Learning Cycle guided reflections across four stages: (1) describing the PPI experience; (2) reviewing and reflecting on the PPI experience; (3) learning from the PPI experience; and (4) planning and trying out learning. Results: Reflections highlighted the importance of: working closely with an advocacy organisation and leader to reach under‐served people; the diversity of experiences; using familiar venues, contingency and budget planning; flexibility and 'allowing time; talking less; listening more'; planning for early and ongoing PPI, and the potential of mobile 'one‐off' PPI outreach models to reach vulnerable groups. Conclusion: Kolb's Experiential Learning Cycle aided team reflection on feedback from PEH, which helped refine and strengthen a physiotherapy research proposal. The project was unfunded. However, a reflective model helped maximize learning and impact including for future PPI and research. The novel application of Kolb's Experiential Learning Cycle provided structure, facilitated reflection and enhanced individual and collective learning and may benefit capturing learning from PPI with other vulnerable populations. Patient or Public Contribution: We highlight how a PPI consultation with people with experience of homelessness helped shape a funding proposal. Additionally, the reflections of the experts by experience team leader are included. [ABSTRACT FROM AUTHOR]

The National Institute for Health Research (NIHR) aims to improve national 'health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of 'clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of 'assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system. [ABSTRACT FROM AUTHOR]

Context The National Institute for Health and Care Excellence ( NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. Objective This paper considers how NICE Single Technological Appraisal ( STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. Methods A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. Settings and participants Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. Results Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. Conclusions Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives. [ABSTRACT FROM AUTHOR]

Introduction: The mental health of young people (aged 16–25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under‐representation' in young people's involvement in mental health research. Methods: Twenty‐seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under‐representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. Results: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed‐upon definition of under‐representation, an identification of when in the research process there is under‐representation and the characteristics of the young people who are under‐represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. Conclusions: This study adds to our understanding of involvement and under‐representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. Patient and Public Contribution: A research oversight group of five young people advised on this study. They contributed throughout the project—from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions. [ABSTRACT FROM AUTHOR]

Introduction: This exploratory literature review seeks to examine the literature around commissioning processes in the co‐production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co‐production in service design and delivery? What are the contextual factors that influence these processes? Method: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008–2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty‐seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. Results: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co‐production; navigating relationships and the collective voice. Conclusion: Commissioning processes were commonly a barrier to the co‐production of health and care services. Though co‐production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer‐term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. Patient and Public Contribution: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement. [ABSTRACT FROM AUTHOR]

There has been considerable momentum within the NHS over the last 10 years to develop greater patient and public involvement (PPI). This commitment has been reflected in numerous policy initiatives. In patient safety, the drive to increase involvement has increasingly been seen as an important way of building a safety culture. Evidence suggests, however, that progress has been slow and even more variable than in health care generally. Given this context, the paper analyses some of the key underlying drivers for involvement in the wider context of health and social care and makes some suggestions on what lessons can be learned for developing the PPI agenda in patient safety. To develop PPI further, it is argued that a greater understanding is needed of the contested nature of involvement in patient safety and how this has similarities to the emergence of user involvement in other parts of the public services. This understanding has led to the development of a range of critical theories to guide involvement that also make more explicit the underlying factors that support and hinder involvement processes, often related to power inequities and control. Achieving greater PPI in patient safety is therefore seen to require a more critical framework for understanding processes of involvement that can also help guide and evaluate involvement practices. [ABSTRACT FROM AUTHOR]

The involvement of service users in the design and conduct of health research has developed significantly in the UK in recent years. Involving service users is now seen as a core component of good research practice for all forms of health research. Given the important role that users have in health research, it is necessary to develop guidelines for their effective involvement. Whilst guidelines are currently being formulated, there remain no criteria with which to assess user involvement in published studies and funding applications. This study offers guidelines for appraising the quality and impact of user involvement in published papers and grant applications. Appraisal guidelines for user involvement have been developed on the basis of available literature and experiences from studies involving cancer patients and carers in the design and conduct of research. Nine appraisal criteria have been developed. Criteria include issues such as 'Is the rationale for involving users clearly demonstrated?', 'Is the level of user involvement appropriate?', 'Is the recruitment strategy appropriate?', and 'Is the nature of training appropriate?' Generating and applying guidelines is vital if the impact of user involvement agenda in health research is to be understood. [ABSTRACT FROM AUTHOR]

Background Members of the public are increasingly being invited to become members of a variety of different panels and boards. Objective This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel. Search strategy A systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources. Inclusion criteria We included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees. Data synthesis Results were synthesised via narrative methods. Main results Thirty-six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology. Discussion and conclusions The results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on-going support. [ABSTRACT FROM AUTHOR]

Background Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective To explore power relations in patient and public involvement ( PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Discussion and conclusions Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power. [ABSTRACT FROM AUTHOR]

Objective The importance of involving patients in reporting on safety is increasingly recognized. Whilst studies have identified barriers to clinician incident reporting, few have explored barriers and facilitators to patient reporting of safety experiences. This paper explores patient perspectives on providing feedback on safety experiences. Design/Participants Patients (n=28) were invited to take part in semi-structured interviews when given a survey about their experiences of safety following hospital discharge. Transcripts were thematically analysed using NVivo10. Setting Patients were recruited from four hospitals in the UK. Results Three themes were identified as barriers and facilitators to patient involvement in providing feedback on their safety experiences. The first, cognitive-cultural, found that whilst safety was a priority for most, some felt the term was not relevant to them because safety was the 'default' position, and/or because safety could not be disentangled from the overall experience of care. The structural-procedural theme indicated that reporting was facilitated when patients saw the process as straightforward, but that disinclination or perceived inability to provide feedback was a barrier. Finally, learning and change illustrated that perception of the impact of feedback could facilitate or inhibit reporting. Conclusions When collecting patient feedback on experiences of safety, it is important to consider what may help or hinder this process, beyond the process alone. We present a staged model of prerequisite barriers and facilitators and hypothesize that each stage needs to be achieved for patients to provide feedback on safety experiences. Implications for collecting meaningful data on patients' safety experiences are considered. [ABSTRACT FROM AUTHOR]

Although the law in England and Wales requires a child's wishes and feelings to be heard in LAC (Looked After Children) reviews, there remains limited research into how far this is achieved. This study interviewed 25 children and 16 foster carers to explore how well children understand and take part in reviews, and what factors impede this. The study found that levels of participation, as experienced by children and foster carers, were very low and the methods used were relatively ineffective. Children experienced significant barriers in engaging with the review process. The paper concludes that, as a vehicle of children's participation, LAC reviews are still not working well and calls for more attention to the views of children and young people and to the effectiveness of LAC reviews. [ABSTRACT FROM AUTHOR]

Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co‐produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. Methods: Two virtual and two face‐to‐face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face‐to‐face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Results: Forty stakeholders attended four workshops. Workshops provided step‐by‐step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one‐sided, two‐half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty‐two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p <.001) and inequalities (p <.001). Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

• This paper explores the evolution of patient and public involvement in campaigning at Cancer Research UK. • Cancer Research UK is the world's leading charity dedicated to cancer research. They support research into all aspects of cancer through the work of more than 4500 scientists, doctors and nurses in over 40 towns and cities in the UK. They produce information for audiences including cancer patients and their families, the general public and health professionals. They also work with government in Westminster, Scotland, Wales and Europe to ensure cancer is at the top of the political agenda. • In 4 years, the charity grew its campaigner base from zero to well over a third of a million people. This case study covers the research exercise in 2004, the 2005 launch of the pilot and growth of the nascent campaigning function, the major campaigns up to 2008 and what lessons were learnt from them. • The aim of this case study is to examine how the process occurred, share insights into the challenges and opportunities, and make recommendations for any organization considering a similar move. [ABSTRACT FROM AUTHOR]

Objectives: Dentists and other members of the dental team could raise awareness by talking about oral cancer during routine dental check‐ups. A communication guide has been developed to facilitate this. However, it has been suggested that discussions about oral cancer may raise patients' anxiety and this has been documented by dentists as a barrier to having these conversations. The current research aimed to investigate implementation of the communication guide and its impact on the dental patient. Methods: A consecutive‐case sample of adult dental patients attending primary dental care for a routine NHS check‐up at one dental practice were invited to take part in the study via letter prior to their appointment. Consultations of participating patients (n = 77) were audio‐recorded. Before and after their appointment, patients were asked to rate their current anxiety via the six‐item version of Spielberger's State‐Trait Anxiety Inventory. Audio recordings of each consultation were reviewed by two raters to determine the extent to which the dentist covered the topics recommended in the communication guide. Results: The dentist informed all patients that they were being checked for oral cancer, spoke about signs and symptoms, and discussed risk factors. However, they rarely recommended where help should be sought or addressed barriers to seeking help. Discussions took an average of 95 s. The extent to which oral cancer was discussed did not correlate with patients' post‐appointment anxiety. Patients made positive or neutral responses to the discussions. The few questions that were asked were easily addressed. Conclusions: As findings are based on one dentist working at one practice, generalization of these results should be cautious. The study indicated that using an evidence‐based guide to talk about oral cancer did not appear to raise patients' anxiety in this practice population. This could help to increase awareness of oral cancer in the endeavour to facilitate early cancer diagnosis. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face‐to‐face consultation may no longer be the dominant method for PPI. Methods: UK stay‐at‐home measures announced in March 2020 necessitated immediate revisions to the intended face‐to‐face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first‐hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. Discussion and Conclusions: While concerns have been expressed about the possible limiting effects of forgoing face‐to‐face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. Patient and Public Contribution: We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript. [ABSTRACT FROM AUTHOR]

Background: During the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method: Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic. Findings: Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion: Around half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them. Accessible summary: During the Covid‐19 pandemic, a lot of people with learning disabilities used the Internet more than they had done before. Before this research, we did not know very much about how people with profound and multiple learning disabilities might be able to use the Internet.Family carers or paid support workers of people with profound and multiple learning disabilities filled in an online survey about their experiences during the Covid‐19 pandemic. This included how people with profound and multiple learning disabilities used the Internet.The researchers found that around half of people with profound and multiple learning disabilities in the study had Internet access at home. People with profound and multiple learning disabilities mostly used the Internet for being with friends and family online and for streaming TV and films. Around half of people with profound and multiple learning disabilities used video calls (like FaceTime or Zoom).If there is another pandemic, and people cannot go out, more help with technology is needed so that people with profound and multiple learning disabilities can see their family and friends online. This is very important for people who do not live with family.Some people thought digital participation was useful during the pandemic, but they preferred to see people in‐person. For others, being online was a new way of being with other people that they wanted to carry on using or make better. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing understanding of the benefits of patient and public involvement (PPI), and its evaluation, in research. An online version of the CUBE PPI evaluation framework has been developed. We sought to use the CUBE to evaluate the value of early PPI with two small healthcare companies during product development. Methods: Contributors were recruited online and had lived experience of either type 1 diabetes or obesity. Two 1‐h sessions were run with a company developing a smartphone application to manage diabetes (DEE‐EM): one with young people (YP; n = 5) and one with parents (n = 7). Two 1‐h sessions were run with a company developing a weight‐loss product, both with adults (n = 7 in each session). Sessions were facilitated by an independent University researcher and attended by company representatives, who presented their product. One facilitator led the evaluation of the session by giving a demonstration of the CUBE and asking simple questions in the YP session. Results: A high proportion of contributors completed the CUBE (80.5% DEE‐EM; 93% Oxford Medical Products). Responses were positive to all four CUBE dimensions (in italics). Contributors felt there were diverse ways to contribute to the sessions, and that they had a strong voice to add to the discussion. Balance was achieved regarding whose concerns (public or company) led the agenda, and contributors felt that both companies would make changes based on the discussion. The supportive attitude of both companies resulted in most contributors feeling comfortable participating in PPI sessions with the industry, while recognising the profit‐making aspect of their work. Conclusions: PPI with small healthcare companies is both feasible and worthwhile. The CUBE framework facilitated the evaluation of the interaction between experts in different knowledge spaces. We provide recommendations for future projects, including considerations of who should participate and the level of implicit endorsement of the product that participation implies. Patient or Public Contribution: People with lived experience of type 1 diabetes or obesity were invited to contribute to one of four PPI sessions, which they then evaluated. One contributor agreed to contribute to the analysis of the evaluation data and interpretation and preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Aims: To measure the association between problem gambling severity and 19 different gambling activities among emerging adults (aged 16–26). Design: An online non‐probability longitudinal survey collecting data in two waves: wave 1, July/August 2019; wave 2, July/October 2020. Setting: Great Britain Participants: A total of 2080 young adults participating in both waves. Measurements Problem gambling scores were collected using the Problem Gambling Severity Index (PGSI). Binary variables recorded past year participation in 19 different gambling forms, ranging from lotteries to online casino and gambling‐like practices within digital games (e.g. loot box purchase, skin betting). Controls included socio‐demographic/economic characteristics, the Eysenck Impulsivity Scale and the number of gambling activities undertaken. Findings Zero inflated negative binomial model lacked evidence of an effect between past year participation in any individual activities and subsequent PGSI scores. However, negative binomial random effects models for current gamblers (n = 497) showed that skin betting (incidence‐rate ratio [IRR] = 2.32; 95% CI = 1.69–3.19), fixed odd betting terminals (IRR = 2.21, 95% CI = 1.61–3.05), slot/fruit machines (IRR = 1.43, 95% CI = 1.07–1.91), online betting on horse/dog races (IRR = 1.53, 95% CI = 1.17–2.00) and online betting on non‐sports events (IRR = 1.44, 95% CI = 1.11–1.89) were associated with increased PGSI scores. Online casino gambling had a significant interaction by wave; the impact of online casino betting in wave 2 on PGSI scores increased by a factor of 1.61. Conclusions: Past year participation of young adults (aged 16–26) in certain forms of gambling does not appear to be associated with future Problem Gambling Severity Index scores. Among young adults who are current gamblers, past year participation in certain land‐based (e.g. electronic gaming machines) and online forms (e.g. skin betting) of gambling appears to be strongly associated with elevated Problem Gambling Severity Index scores. [ABSTRACT FROM AUTHOR]

Objectives: To develop a patient's attitude questionnaire regarding prevention in oral health for use internationally. Methods: Using a mixed methods approach, a questionnaire was developed and refined as part of ADVOCATE (Added Value for Oral Care) study, involving partners in six countries: Netherlands, Hungary, Denmark, Ireland, Germany, and the UK. A literature review explored the history of oral healthcare delivery systems to develop a template for each of the six ADVOCATE countries. A systematic review identified the perceived barriers and facilitators to preventive oral healthcare and underpinned a topic guide and established the patient questionnaire domains. Focus groups in each ADVOCATE country developed the first version of the questionnaire. Patient and Public Involvement and Engagement (PPIE) in each ADVOCATE country tested the questionnaire and led to further refinement. The questionnaire was produced in five languages. Content validity and reproducibility used principal component analysis (PCA) and exploratory factor analysis (EFA) refined the questionnaire. Results: The literature review aided an understanding of each country's oral healthcare system, and the findings from the 25 studies identified in the systematic review found the main barriers/facilitators to preventive oral healthcare were cost, knowledge (preventive treatments and advice), and a patient awareness and adherence to preventive advice/treatments. Interviews and focus groups with 148 participants in the ADVOCATE study identified receiving the appropriate level of care/feeling valued, cost, level of motivation/priority, not feeling informed, knowledge, and skill mix as the main barriers/facilitators. Fifty‐three PPIE members refined the questionnaire. The pilot questionnaire was tested with 160 participants. Non‐essential or highly correlated variables were then removed, leaving 38 items, covering 6 domains (cost, advice received, advice wanted, message delivery, motivation, knowledge, and responsibility) within the questionnaire. A second pilot test‐run was undertaken with 185 participants. The test‐re‐test reliability demonstrated strong consistency of responses between the two time points (kappa range 0.3–0.7, most p <.0011), which culminated with a final version of the Patient Attitudes to Prevention in Oral Health Questionnaire (PAPOH) questionnaire. Conclusions: This mixed‐methods approach enabled the development of a multi‐language attitudinal questionnaire for use with patients (PAPOH) to compare attitudes to oral disease prevention internationally. [ABSTRACT FROM AUTHOR]

Background There is a growing literature on evaluating aspects of patient and public involvement ( PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. Aim We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. Methods We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. Results The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. Discussion The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future. [ABSTRACT FROM AUTHOR]

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self-care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a 'Menu of Interventions' for personalized self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years) and their parents and therapists. [ABSTRACT FROM AUTHOR]

Aims: To develop a position statement which identifies research priorities to address health inequalities in diabetes and provides recommendations to researchers and research funders on how best to conduct research in these areas. Methods: A two‐day research workshop was conducted bringing together research experts in diabetes, research experts in health inequalities, healthcare professionals and people living with diabetes. Results: The following key areas were identified as needing increased focus: How can we improve patient and public involvement and engagement to make diabetes research more inclusive of and relevant to diverse communities?How can we improve research design so that the people who could benefit most are represented?How can we use theories from implementation science to facilitate the uptake of research findings into routine practice to reach the populations with highest need?How can we collate and evaluate local innovation projects and disseminate best practice around tackling health inequalities in diabetes?How can we best collect and use data to address health inequalities in diabetes, including the harnessing of real‐world and routinely collected data?How could research funders allocate funds to best address health inequalities in diabetes?How do we ensure the research community is representative of the general population? Conclusions: This position statement outlines recommendations to address the urgent need to tackle health inequalities in diabetes through research and calls on the diabetes research community to act upon these recommendations to ensure future research works to eliminate unfair and avoidable disparities in health. [ABSTRACT FROM AUTHOR]

Over the past decade, U.K. universities have increasingly sought to involve publics in research as active participants in the construction of academic knowledge. Sociologists of health have largely welcomed this enthusiasm for engaged and participatory ways of working, including methodologies long in use in the field such as patient‐led research and co‐creation. Despite the strong interest in engaged research, however, we argue that funding patterns, bureaucratic structures and an overreliance on people employed on casual contracts make it extremely difficult, often impossible, to do engaged research in British universities. Drawing on our own experiences, we show how our attempts to practise and deepen accountability to variously situated publics were constrained by the way our institution imagined and materially supported engagement. We argue that it falls to individual researchers to mitigate or work around structural barriers to engagement, and that this process creates dilemmas of complicity. If engaged research is to fulfil its remit for inclusion and its radical potential, researchers need to think carefully about how the U.K. engagement agenda entwines with processes of casualisation, acceleration and projectification, and how institutional recuperations of engagement can undermine its political and epistemic objectives. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to how research design and implementation can improve when informed by experiential, as well as technical, knowledge. In other words, public involvement can increase the epistemological resources of researchers, and contribute to research that is fit for purpose and has high external validity. Methods: This article presents an analysis of 3 meetings and 11 interviews with public collaborators and researchers in three UK‐based health research studies. Data comprised transcripts of audio‐recorded research meetings and interviews with public collaborators and researchers. Data were first analysed to develop a data‐informed definition of experiential knowledge, then thematically to investigate how this experiential knowledge was considered and received within the research space. Results: At meetings, public collaborators shared their experiential knowledge as stories, comments, questions, answers and when referring to their own roles. They were aware of crossing a boundary from everyday life, and some adapted their contributions to fit within the research space. Although researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact were identified. Conclusions: Considering experiential knowledge as a boundary object highlights that this knowledge has a different form to other kinds of knowledge that contribute to research. To enable impact from experiential knowledge, researchers need to create a space where public collaborators experience epistemic justice. Patient and Public Contribution: The Peninsula Public Engagement Group (PenPEG) was involved in the planning and conceptualization of the study, including the development of the ethics application and the interview schedules. One member of this group (Richard Fitzgerald) and one from outside the group (Leon Farmer), were full members of the author team and were involved in the data analysis. Leon Farmer has since become a member of PenPEG. Richard Fitzgerald and Leon Farmer were not involved in the three research studies sampled for this study. Sadly Richard Fitzgerald died during the course of this study. [ABSTRACT FROM AUTHOR]

Test anxiety can have a deleterious impact on academic achievement and adversely affect adolescent well‐being, both concurrently and in later life. The current study explored the use of compassionate mind training (CMT) as a school‐based intervention for test anxiety among adolescents. Participants were 47 adolescents, aged 16–17 years, attending a post‐primary school in the UK and enrolled to take qualifications beyond compulsory education. Participants were quasi‐randomly allocated on the basis of timetable availability into an intervention group that received eight sessions of CMT (n = 22) or a control group (n = 25). Participants in both groups completed pre‐ and post‐intervention measures of test anxiety, general anxiety and self‐compassion. Attendance and retention rates were used as an index of intervention feasibility. The findings indicated that CMT was a feasible and effective intervention. Adolescents receiving CMT showed significant reductions in test anxiety and general anxiety, as well as a significant improvement in self‐compassion following the intervention compared with the control group. The findings highlight the potential value of CMT in supporting young people suffering from test anxiety in schools. The implications for counselling practice are discussed. [ABSTRACT FROM AUTHOR]

The article presents an interview with Professor David Webb president of the organization, British Pharmacological Society (BPS) and Christison professor of therapeutics and clinical pharmacology at the University of Edinburgh, Scotland. He discusses how he feels passionate about pharmocology. He discusses drug development including challenges faced by it, the impact of British exit from the European Union (BREXIT) on it, and its future. He discusses the representation of women in the field.

Background: Postoperative complications contribute to unplanned hospital readmissions, reoperations, and increased mortality for surgical patients. Discharge education for general surgical patients is often inadequate, and challenged by organizational, clinician and patient factors. Purpose: This research describes the development of the web‐based discharge education intervention to improve patients' knowledge, skills, and confidence in self‐managing their recovery after general surgery. Methods: The intervention was informed by the UK Medical Research Council guidance for developing and evaluating complex interventions and Knowledge‐to‐Action framework, consisting of four iterative stages. Stakeholder engagement was undertaken throughout the development process and a logic model was utilized to map the working mechanism of the intervention. The concept of patient activation and Knowles adult learning theory underpinned the development process. Results: The literature review and stakeholders' engagement in qualitative interviews and a series of meetings resulted in a web‐based discharge education program with three different components: (1) post general surgery warning signs; (2) post general surgery everyday care instructions; and (3) animation video on wound potential wound complications. Conclusion: The web‐based discharge education was developed according to the needs and preferences of healthcare providers and general surgical patients. Despite the rigorous and systematic approach used to develop the intervention, its effectiveness requires testing. Clinical relevance: This comprehensive iterative approach serves as a guide for others planning web‐based interventions designed for surgical patients and the research approach used may inform those developing web‐based interventions for other patient groups. [ABSTRACT FROM AUTHOR]

Celebrating its 75th year in 2022, Lynsey Hawker and Imrana Ghumra, Co‐Chairs of the Health Libraries Group (HLG) look back on its origins, celebrate key activities and achievements. From its humble beginnings as the Medical Section of the UK Library Associations' University and Research Section, becoming a Section in its own right, its evolution as the Medical, Health and Welfare Libraries Group. Celebrating its publications, awards, partnership working and advocacy work, they invite you to share your memories and reflections on the HLG and its previous incarnations. [ABSTRACT FROM AUTHOR]

Background: The SlowMo study demonstrated the effects of SlowMo, an eight‐session digitally supported reasoning intervention, on paranoia in a large‐scale randomized‐controlled trial with 362 participants with schizophrenia‐spectrum psychosis. Aim: The current evaluation aimed to investigate the impact of Patient and Public Involvement (PPI) in the SlowMo study. Method: PPI members were six women and three men from Sussex, Oxford and London with experience of using mental health services for psychosis. They received training and met at least 3‐monthly throughout the project. The impact of PPI was captured quantitatively and qualitatively through (i) a PPI log of recommendations and implementation; (ii) written subjective experiences of PPI members; (iii) meeting minutes; and (iv) outputs produced. Results: The PPI log revealed 107 recommendations arising from PPI meetings, of which 87 (81%) were implemented. Implementation was greater for recruitment‐, data collection‐ and organization‐related actions than for dissemination and emergent innovations. Qualitative feedback revealed impacts on study recruitment, data collection, PPI participants' confidence, knowledge, career aspirations and society more widely. Outputs produced included a film about psychosis that aired on BBC primetime television, novel webpages and journal articles. Barriers to PPI impact included geography, travel, funding, co‐ordination and well‐being. Discussion: A future challenge for PPI impact will be the extent to which peer innovation (innovative PPI‐led ideas) can be supported within research study delivery. Patient and Public Contribution: Planned Patient and Public Contribution in SlowMo comprised consultation and collaboration in (i) design, (ii) recruitment, (iii) qualitative interviews and analysis of service users' experiences of SlowMo therapy and (iv) dissemination. [ABSTRACT FROM AUTHOR]

Disabled children are among the most marginalised in our society. Their influence has been negligible on policies and service practices that directly affect their lives. Empirical research using innovative methodologies can at least enable their voices to be heard. Based on the contributions of leading researchers and practitioners to a seminar series in the UK, a schema to guide future research was developed that aims to reduce the fragmented approach that exists at present. It considers both the context in which research is conducted and the nature of the investigations. The schema places particular emphasis on research influencing policy and practice. [ABSTRACT FROM AUTHOR]

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital. [ABSTRACT FROM AUTHOR]

The article presents information on introducing patient choice in the National Health service, Great Britain. There has been a move by policy makers and commentators away from the traditional model of care based on medical beneficence--'doctor knows best'--to one in which patients are autonomous service users who make active choices about the amount and type of health care they consume. This paper considers the assumptions behind patient choice as a policy instrument and examines the role of information in making patient choice a viable option in practice.

Background: Public health initiatives seek to modify lifestyle behaviours associated with risk (e.g., diet, exercise, and smoking), but underpinning psychological and affective processes must also be considered to maximize success. Objective: This study aimed to qualitatively assess how participants engaged with and utilized the best possible self (BPS)‐intervention specifically as a type 2 diabetes (T2D) prevention tool. Design and Methods: Fourteen participants engaged with a tailored BPS intervention. Reflexive thematic analysis analysed accounts of participant's experiences and feasibility of use. Results: All participants submitted evidence of engagement with the intervention. The analysis considered two main themes: Holistic Health and Control. The analysis highlighted several nuanced ways in which individuals conceptualized their health, set goals, and received affective benefits, offering insights into how people personalized a simple intervention to meet their health needs. Conclusions: To our knowledge, this is the first study to tailor the BPS intervention as a public health application for the prevention of T2D. The intervention enabled users to identify their best possible selves in a way that encouraged T2D preventive behaviours. We propose that our tailored BPS intervention could be a flexible and brief tool to assist public health efforts in encouraging change to aid T2D prevention. Public Contribution: The format, language and application of the BPS intervention were adapted in response to a public consultation group that developed a version specifically for application in this study. [ABSTRACT FROM AUTHOR]

Objectives: To investigate the association between chemsex drug use and HIV clinic attendance among gay and bisexual men in London. Methods: A cross‐sectional survey of adults (> 18 years) diagnosed with HIV for > 4 months, attending seven London HIV clinics (May 2014 to August 2015). Participants self‐completed an anonymous questionnaire linked to clinical data. Sub‐optimal clinic attenders had missed one or more HIV clinic appointments in the past year, or had a history of non‐attendance for > 1 year. Results: Over half (56%) of the 570 men who identified as gay or bisexual reported taking recreational drugs in the past 5 years and 71.5% of these men had used chemsex drugs in the past year. Among men reporting chemsex drug use (past year), 32.1% had injected any drugs in the past year. Sub‐optimal clinic attenders were more likely than regular attenders to report chemsex drug use (past year; 46.9% vs. 33.2%, P = 0.001), injecting any drugs (past year; 17.1% vs. 8.9%, P = 0.011) and recreational drug use (past 5 years; 65.5% vs. 48.8%, P < 0.001). One in five sub‐optimal attenders had missed an HIV clinic appointment because of taking recreational drugs (17.4% vs. 1.8%, P < 0.001). In multivariable logistic regression, chemsex drug use was significantly associated with sub‐optimal clinic attendance (adjusted odds ratio = 1.71, 95% confidence interval: 1.10–2.65, P = 0.02). Conclusions: Our findings highlight the importance of systematic assessment of drug use and development of tools to aid routine assessment. We suggest that chemsex drug use should be addressed when developing interventions to improve engagement in HIV care among gay and bisexual men. [ABSTRACT FROM AUTHOR]

Background: Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives: The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG‐PC. Design: An experience‐based co‐design approach. Setting and Participants: We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG‐PC. Results: Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health‐care providers were considered essential for actively involving patients in patient safety. Co‐developing the PSG‐PC provided insight to improve care to develop the PSG‐PC. Discussion: The PSG‐PC is the first guide to be developed for primary care, co‐designed with patients, carers, general practitioners and pharmacists. The PSG‐PC will support patients and carers to partner with health‐care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety. [ABSTRACT FROM AUTHOR]

Background: Public involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include "service user" involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers. Objectives: A unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples' knowledge, skills and confidence for their involvement in the health faculty. Design: PPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills. Results: The workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes. Discussion: Co‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors. Recommendations: Co‐production was seen as integral to this research to ensure that outcomes were indeed "fit for purpose". [ABSTRACT FROM AUTHOR]

Objective: Research into patient and public involvement (PPI) has not examined in detail patient and public involvement facilitators' (PPIFs) roles and activities. This study analysed PPIFs' roles using qualitative data gathered from three different UK health‐care organizations. Design: Thematic analysis was used to examine cross‐sectional data collected using a mixed‐methods approach from three organizations: a mental health trust, a community health social enterprise and an acute hospital trust. The data set comprised of 27 interviews and 48 observations. Findings: Patient and public involvement facilitators roles included the leadership and management of PPI interventions, developing health‐care practices and influencing quality improvements (QI). They usually occupied middle‐management grades but their PPIF role involved working in isolation or in small teams. They reported facilitating the development and maintenance of relationships between patients and the public, and health‐care professionals and service managers. These roles sometimes required them to use conflict resolution skills and involved considerable emotional labour. Integrating information from PPI into service improvement processes was reported to be a challenge for these individuals. Conclusions: Patient and public involvement facilitators capture and hold information that can be used in service improvement. However, they work with limited resources and support. Health‐care organizations need to offer more practical support to PPIFs in their efforts to improve care quality, particularly by making their role integral to developing QI strategies. [ABSTRACT FROM AUTHOR]

Crisis resolution teams (CRTs) provide treatment at home to people experiencing mental health crises, as an alternative to hospital admission. Previous UK research, based on self‐report surveys, suggests that a loosely specified model has resulted in wide variations in CRTs' service delivery, organization and outcomes. A fidelity scale (developed through evidence review and stakeholder consensus) provided a means of objectively measuring adherence to a model of good practice for CRTs, via one‐day fidelity reviews of UK crisis teams. Reviews included interviews with service users, carers, staff and managers, and examination of data, policies, protocols and anonymized case notes. Of the 75 teams reviewed, 49 (65%) were assessed as being moderate fidelity and the rest as low fidelity, with no team achieving high fidelity. The median score was 122 (range: 73–151; inter‐quartile range: 111–132). Teams achieved higher scores on items about structure and organization, for example ease of referral, medication and safety systems, but scored poorly on items about the content of care and interventions. Despite a national mandate to implement the CRT model, there are wide variations in implementation in the UK and no teams in our sample achieved overall high fidelity. This suggests that a mandatory national policy is not in itself sufficient to achieve good quality implementation of a service model. The CRT Fidelity Scale provides a feasible and acceptable means to objectively assess model fidelity in CRTs. There is a need for development and testing of interventions to enhance model fidelity and facilitate improvements to these services. [ABSTRACT FROM AUTHOR]