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

Background: 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]

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]

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]

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]

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]

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]

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]

Objective: This study aimed to explore patients' experiences of their involvement in the design and delivery of interprofessional education interventions focussing on mental ill‐health for students studying in undergraduate healthcare and healthcare‐related programmes. Design: A qualitative methodology using a Grounded Theory approach was used to undertake an iterative series of focus groups with members of a university's Patient, Carer and Public Involvement (PCPI) Group who have a history of mental ill‐health and were involved in the development and delivery of educational interventions for students on undergraduate healthcare and healthcare‐related programmes. Their experiences of being involved in teaching and learning activities, collaboration with academic staff and integration into the academic faculty were explored. Constant comparative analysis facilitated the identification and prioritisation of salient themes. Results: Five salient inter‐related themes emerged from the data: (1) reduced stigma and normalisation of experience of illness; (2) enhanced self‐worth; (3) improved well‐being; (4) community and connection; and (5) enduring benefits. Conclusions: A supportive university community and a designated academic PCPI co‐ordinator facilitate a supportive environment for patients and carers to develop as educators, contribute to the training of future healthcare professionals and improve their own personal well‐being. Appropriately resourced and well‐supported initiatives to integrate patients, carers and the public into the functions of an academic faculty can result in tangible benefits to individuals and facilitate meaningful and enduring connections between the university and the wider community within which it is situated. Patient and Public Involvement: Patients have been involved in the design of the teaching and learning initiatives that this study was primarily focused on. Patients were given autonomy in determining how their experiences should be incorporated into teaching and learning experiences. [ABSTRACT FROM AUTHOR]

Context: Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. Design: We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. Results: We propose that being involved in care is a dynamic form of labour, which we call 'involvement work' (IW). In hospital, many patients 'entrust' IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. Discussion: Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence. Conclusions: A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that 'delegating' IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. Patient/Public Contribution: Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented. [ABSTRACT FROM AUTHOR]

Objectives: This research aimed to assess women's willingness to receive advice about cervical and bowel cancer screening participation and advice on cancer symptom awareness when attending breast cancer screening. Methods: Women (n = 322) aged 60–64 years, living in the United Kingdom, who had previously taken part in breast cancer screening were recruited via a market research panel. They completed an online survey assessing willingness to receive advice, the potential impact of advice on breast screening participation, prospective acceptability and preferences for mode and timing of advice. Results: Most women would be willing to receive information about cervical (86%) and bowel cancer screening (90%) and early symptoms of other cancers (92%) at a breast cancer screening appointment. Those who were not up to date with cervical cancer screening were less willing. Prospective acceptability was high for all three forms of advice and was associated with willingness to receive advice. Women would prefer to receive advice through a leaflet (41%) or discussion with the mammographer (30%) either before the appointment (27%), at the appointment (44%) or with their results (22%). Conclusions: While there is high willingness and high acceptability towards using breast cancer screening as a teachable moment for advice about prevention and early detection of other cancers, some women find it unacceptable and this may reduce their likelihood of attending a breast screening appointment. Patient or Public Contribution: This study focused on gaining women's insights into potential future initiatives to encourage screening and early diagnosis of cancer. Members of the public were also involved in piloting the questionnaire. [ABSTRACT FROM AUTHOR]

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]

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: 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]

Background: Patient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation. Objective: To understand service users' and carers' views on the current use and potential applicability of PPI within Indonesian mental health services. Design: Qualitative study incorporating focus groups analysed using thematic analysis. Setting and participants: Participants included 22 service users and 21 carers recruited from two study sites in Indonesia (Jakarta and Bogor). All participants had experience of psychosis either as a service user or carer. Results: Despite the value attributed to PPI in relation to improving services and promoting recovery, current use of such activities in Indonesian mental health services was limited. Participants expressed a desire for greater levels of involvement and more holistic care but felt community organizations were best placed to deliver this because PPI was considered more congruent with the ethos of third‐sector organizations. Additional barriers to PPI included stigma and low levels of mental health literacy in both health services and communities. Discussion and conclusion: Participants felt that there was potential value in the use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for third‐sector organizations. Facilitators to global collaborative research in the context of the current study are also discussed. [ABSTRACT FROM AUTHOR]

Background: Young women's attendance at cervical screening in the UK is continuing to fall, and the incidence of invasive cervical cancer is rising. Objectives: We assessed the preferences of non‐attending young women for alternative ways of delivering cervical screening. Design: Postal discrete choice experiment (DCE) conducted during the STRATEGIC study of interventions for increasing cervical screening uptake. Attributes included action required to arrange a test, location of the test, availability of a nurse navigator and cost to the National Health Service. Setting and participants: Non‐attending young women in two UK regions. Main outcome measures: Responses were analysed using a mixed multinomial logit model. A predictive analysis identified the most preferable strategy compared to current screening. Preferences from the DCE were compared with observed behaviours during the STRATEGIC trial. Results: The DCE response rate was 5.5% (222/4000), and 94% of respondents agreed screening is important. Preference heterogeneity existed around attributes with strong evidence for test location. Relative to current screening, unsolicited self‐sampling kits for home use appeared most preferable. The STRATEGIC trial showed this same intervention to be most effective although many women who received it and were screened, attended for conventional cytology instead. Conclusions: The DCE and trial identified the unsolicited self‐sampling kit as the most preferred/effective intervention. The DCE suggested that the decision of some women receiving the kit in the trial to attend for conventional cytology may be due to anxieties around home testing coupled with a knowledge that ignoring the kit could potentially have life‐changing consequences. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) is recognized as important for improved quality in health service provision and research. Vitamin D is one area where PPIE has potential to benefit public health initiatives, particularly for women and children with increased skin pigmentation (ie at high risk of deficiency) who are easily overlooked. Objective: We report findings from a community PPIE event that explored the knowledge, barriers and promoters for optimal vitamin D status amongst an exemplar high‐risk and easily overlooked population group. Methods: Two researchers and one PPIE lead facilitated a single group discussion with twenty members of the Somali community from across west London. All attendees were women of reproductive age, or knew a mother and child that could benefit from a targeted initiative. The discussion was recorded, transcribed verbatim, organized and coded using NVivo 12 Pro to identify emergent themes underpinned by the Health Behaviour Model. Results: Attendees thought community safety and competing demands of technology and education impacted on sun exposure and lifestyle activity. Language barriers impacted on access to health care. Attendees also felt the mother figure was 'the most important' influencer of both child and wider community health. Discussion: Although further discourse is needed, this event emphasizes that it is important that the public voice is heard in informing, designing and evaluating appropriate public health interventions amongst specific ethnic groups. Insights from this Somali population have suggested benefit from using verbal health messages that are specifically targeted at mothers, compared with the general population. [ABSTRACT FROM AUTHOR]

Background: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long‐term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals. Objective: With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long‐term caring roles. Design: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued. Findings: Mindfulness/ACT can change long‐standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR. Discussion: The use of PHR accessed knowledges that would have been lost to more traditional, professional‐expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re‐consideration of quality issues in relation to PHR and participation. [ABSTRACT FROM AUTHOR]

Background: Funders, policy‐makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. Objective: To explore researchers' experiences and perceptions of patient and public involvement (PPI). Methods: Semi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework. Results: In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. Discussion and conclusions: Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement. [ABSTRACT FROM AUTHOR]

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed. [ABSTRACT FROM AUTHOR]

Background: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. Aim: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities. Method: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. Results: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants' reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants' ideas on future research; and (e) Seeking to share understanding: participants' views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of "putting together a jigsaw" of evidence through perseverance and collaboration. Conclusion: This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients' voices to a call for a more collaborative research culture. [ABSTRACT FROM AUTHOR]

Background: The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect patient feedback to support service improvement. To provide a sustainable mechanism for the PRASE intervention, a 2‐year improvement project explored the potential for hospital volunteers to facilitate the collection of PRASE feedback. Objective: To explore the implementation of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders. Design: A qualitative case study design was utilized across three acute NHS trusts in the United Kingdom between March 2016 and October 2016. Ward level data (staff interviews; action planning meeting recordings; implementation fidelity information) were analysed taking a pen portrait approach. We also carried out focus groups with hospital volunteers and interviews with voluntary services/patient experience staff, which were analysed thematically. Results: Whilst most ward staff reported feeling engaged with the intervention, there were discordant views on its use and usefulness. The hospital volunteers were positive about their involvement, and on some wards, worked with staff to produce actions to improve services. The voluntary services/patient experience staff participants emphasised the need for PRASE to sit within an organisations' wider governance structure. Conclusion: From the perspective of key stakeholders, hospital volunteers facilitating the collection of PRASE feedback is a feasible means of implementing the PRASE intervention. However, the variability around ward staff being able to use the feedback to make changes to services demonstrates that it is this latter part of the PRASE intervention cycle that is more problematic. [ABSTRACT FROM AUTHOR]

Background: We assess the utility of the Public Involvement Impact Assessment Framework (PiiAF) as a resource to support research teams in assessing the impact of Public Involvement across diverse research and public involvement (PI) contexts. PiiAF was developed in response to a well‐documented growth in Public Involvement in health research in the United Kingdom that demands a more sophisticated evidence base to demonstrate its impact. Design: We used a reflective case study approach drawing on contemporaneous meeting notes, PiiAF website resources and retrospective reflections to describe how PiiAF helped us to develop an impact assessment plan of the PI in a university‐based mental health research centre. Discussion: We consider key aspects of our experiences of using PiiAF as a tool to help us design an impact assessment of PI, interpret these experiences with reference to relevant theory and research and share insights that may be useful to other teams considering using PiiAF. Conclusion: These insights include understanding the commitment of time and effort required to develop effective PI impact assessment plans; the flexibility of PiiAF and its ability to be used in a range of research and PI contexts; and the advantages of involving all stakeholders (including the public) in the development of an PI assessment plan. [ABSTRACT FROM AUTHOR]

Abstract: Background: Guidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance. Objective: Our objective was to scrutinize patient and public involvement (PPI) by a pan‐European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research. Setting, participants and analysis: Two public events, one in the UK and one in Denmark were conducted as part of the consortium's on‐going PPI activities in 2014 and 2015. Sixty‐six individuals submitted written comments on the consortium's research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism. Results: The themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co‐occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on‐going. Discussion: This case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue. [ABSTRACT FROM AUTHOR]

Abstract: Context: Reflective accounts of public involvement in research (PI) are important for helping researchers plan and deliver more effective PI activities. In particular, there is a need to address power differentials between team members that can prohibit effective and meaningful involvement. Objective: To critically reflect on the PI practices that underpinned our research project on intimacy and sexuality in care homes, to develop a series of recommendations for improving future PI activities. Setting: The research team comprised five academics from nursing, public health, sociology and psychology, and two members of the public with experience of sex education, and lesbian, gay, bisexual and trans issues in older populations. In order to address power differentials within the group, we developed an approach to PI practice that was grounded in values of openness, inclusion and transparency. Method: Reflective commentaries on the strengths and weaknesses of the team's approach to PI were gathered through interviews and open‐ended questionnaires with research team members. These views were collated and discussed at a workshop comprising research team members and an additional member of the public to generate recommendations for future PI practice. Results: A number of strengths and limitations of our approach to PI were identified. Clear recommendations for improving PI practice were developed for three broad areas of identified difficulty: (i) communication within and between meetings; (ii) the roles and responsibilities of team members; and (iii) PI resources and productivity. Discussion and conclusion: These recommendations add to the developing body of guidance for conducting effective PI. [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]

Background Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement ( PPI) in clinical trials. Objective To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. Design A modified Delphi process including a two round online survey and a stakeholder consensus meeting. Participants In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty-seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. Results Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. Conclusions The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste. [ABSTRACT FROM AUTHOR]

Background There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited. Objectives To improve the quality of life of people with a stoma through use of evidence-based practice based on research priorities set by patients. Design and Methods Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma-related quality of life topics in order of research priority. Participants People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition. Analysis Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann-Whitney U-test or the Kruskal-Wallis test depending on the number of groups. Results In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma. Conclusion People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma-related concerns that impact quality of life. [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]

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]

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]

Measuring clinicians' shared decision‐making (SDM) performance is a key requirement given the intensity of policy interest in many developed countries – yet it remains one of the most difficult methodological challenges, which is a concern for many stakeholders. In this Viewpoint Article, we investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review. We find that patients were involved in the development of only four of the 13 measures. This lack of patient involvement in PRM development is associated with two major threats to content validity, common to all 13 PRMs of SDM: (i) an assumption of patient awareness of ‘decision points’ and (ii) an assumption that there is only one decision point in each healthcare consultation. We provide detailed examples of these threats and their impact on accurate assessment of SDM processes and outcomes, which may hamper efforts to introduce incentives for SDM implementation. We propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and provide a practical example of this approach. [ABSTRACT FROM AUTHOR]

Background: To date, patient involvement in the development of clinical research work has been limited. In 2011, the Telescot research team commenced work on a feasibility trial to investigate home telemonitoring of blood pressure for people who have experienced stroke or transient ischaemic attack (TIA). The team decided to involve patients in the development of the research. Objectives: To improve research design through patient involvement. Method of patient involvement: A modified form of the ‘Scrutiny Panel’ approach was used to involve people who had stroke in the research project. Results: The Patient Panel supported the research in three key ways: it informed patient communication; it presented patient perspectives on the applicability and usability of the intervention; and it guided the development of the qualitative study. Discussion: The initiative was considered a positive experience for all. However, challenges were identified in terms of the time and cost implications of undertaking patient involvement. Implication for research practice: Importance is attached to adequate project planning and development, partnership working with community ‐ based organizations and the necessity for clear role delineation between patients and professionals to enable effective collaborative working. Conclusions: The Telescot Patient Panel was beneficial in supporting the development of the feasibility trial. The Panel approach was considered transferable to other clinical research contexts. [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]

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: User involvement and recovery are now widely used terms within the mental health policy, research and practice discourse. However, there is a question mark about the impact these ideas have in everyday practice. Of interest is the degree of involvement in key transitions of care. In particular, admission to and discharge from acute inpatient mental health wards. Objective: To explore the nature of service user involvement in the admission and discharge process into and out of acute inpatient mental health care. Design: A qualitative study using focus groups. Setting and Participants: One acute, inpatient mental health ward was the focus of the study. Seven uniprofessional focus group interviews were conducted with ward staff, community staff and service users (total number of participants = 52). Conventional, thematic qualitative techniques were used to analyse the data. Results: The data analysed and presented in this article relate to the loss of the service user voice at the key transition points into and out of acute inpatient care. Due to the lack of resources (inpatient beds and community care follow‐up), the role service users could play was diminished. In their narratives, clinical staff associated the person with the process and used language which dehumanized the individual. Conclusion: Service users experience numerous care transitions into and out of hospital. As there is the potential for these encounters to have a lasting negative effect, the importance of ensuring service users have a voice in what is happening to them is crucial. [ABSTRACT FROM AUTHOR]

Background: Despite increasing calls for shared decision making (SDM), the precise mechanisms for its attainment are unclear. Sharing decisions in mental health care may be especially complex. Fluctuations in service user capacity and significant power differences are particular barriers. Objective and design: We trialled a form of facilitated SDM that aimed to generate patients' treatment preferences in advance of a possible relapse. The ‘Joint Crisis Plan’ (JCP) intervention was trialled in four mental health trusts in England between 2008 and 2011. This qualitative study used grounded theory methods to analyse focus group and interview data to understand how stakeholders perceived the intervention and the barriers to SDM in the form of a JCP. Results: Fifty service users with psychotic disorders and 45 clinicians participated in focus groups or interviews between February 2010 and November 2011. Results suggested four barriers to clinician engagement in the JCP: (i) ambivalence about care planning; (ii) perceptions that they were ‘already doing SDM’; (iii) concerns regarding the clinical ‘appropriateness of service users’ choices'; and (iv) limited ‘availability of service users’ choices'. Service users reported barriers to SDM in routine practice, most of which were addressed by the JCP process. Barriers identified by clinicians led to their lack of constructive engagement in the process, undermining the service users' experience. Conclusions: Future work requires interventions targeted at the engagement of clinicians addressing their concerns about SDM. Particular strategies include organizational investment in implementation of service users' choices and directly training clinicians in SDM communication processes. [ABSTRACT FROM AUTHOR]