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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: Comparative optimism, the belief that negative events are more likely to happen to others rather than to oneself, is well established in health risk research. It is unknown, however, whether comparative optimism also permeates people's health expectations and potentially behaviour during the COVID‐19 pandemic. Objectives: Data were collected through an international survey (N = 6485) exploring people's thoughts and psychosocial behaviours relating to COVID‐19. This paper reports UK data on comparative optimism. In particular, we examine the belief that negative events surrounding risk and recovery from COVID‐19 are perceived as more likely to happen to others rather than to oneself. Methods: Using online snowball sampling through social media, anonymous UK survey data were collected from N = 645 adults during weeks 5‐8 of the UK COVID‐19 lockdown. The sample was normally distributed in terms of age and reflected the UK ethnic and disability profile. Findings: Respondents demonstrated comparative optimism where they believed that as compared to others of the same age and gender, they were unlikely to experience a range of controllable (eg accidentally infect/ be infected) and uncontrollable (eg need hospitalization/ intensive care treatment if infected) COVID‐19‐related risks in the short term (P <.001). They were comparatively pessimistic (ie thinking they were more at risk than others for developing COVID‐19‐related infection or symptoms) when thinking about the next year. Discussion: This is one of the first ever studies to report compelling comparative biases in UK adults' thinking about COVID‐19. [ABSTRACT FROM AUTHOR]

Background & objectives: The comparative uses of different types of patient experience (PE) feedback as data within quality improvement (QI) are poorly understood. This paper reviews what types are currently available and categorizes them by their characteristics in order to better understand their roles in QI. Methods: A scoping review of types of feedback currently available to hospital staff in the UK was undertaken. This comprised academic database searches for "measures of PE outcomes" (2000‐2016), and grey literature and websites for all types of "PE feedback" potentially available (2005‐2016). Through an iterative consensus process, we developed a list of characteristics and used this to present categories of similar types. Main results: The scoping review returned 37 feedback types. A list of 12 characteristics was developed and applied, enabling identification of 4 categories that help understand potential use within QI—(1) Hospital‐initiated (validated) quantitative surveys: for example the NHS Adult Inpatient Survey; (2) Patient‐initiated qualitative feedback: for example complaints or twitter comments; (3) Hospital‐initiated qualitative feedback: for example Experience Based Co‐Design; (4) Other: for example Friends & Family Test. Of those routinely collected, few elicit "ready‐to‐use" data and those that do elicit data most suitable for measuring accountability, not for informing ward‐based improvement. Guidance does exist for linking collection of feedback to QI for some feedback types in Category 3 but these types  are not routinely used. Conclusion: If feedback is to be used more frequently within QI, more attention must be paid to obtaining and making available the most appropriate types. [ABSTRACT FROM AUTHOR]

Background: Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health‐care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. Objectives: This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. Design: A prospective case study design, with an embedded qualitative evaluation of PIR activity. Setting and participants: Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Data collection: Qualitative data collection involved discussion groups, and site‐specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. Results: PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Discussion and conclusions: Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. [ABSTRACT FROM AUTHOR]

Background: Despite the availability of effective evidence‐based treatments for depression and anxiety, many ‘harder‐to‐reach’ social and patient groups experience difficulties accessing treatment. We developed a complex intervention, the AMP (Improving Access to Mental Health in Primary Care) programme, which combined community engagement (CE), tailored (individual and group) psychosocial interventions and primary care involvement. Objectives: To develop and evaluate a model for community engagement component of the complex intervention. This paper focuses on the development of relationships between stakeholders, their engagement with the issue of access to mental health and with the programme through the CE model. Design: Our evaluation draws on process data, qualitative interviews and focus groups, brought together through framework analysis to evaluate the issues and challenges encountered. Setting & participants: A case study of the South Asian community project carried out in Longsight in Greater Manchester, United Kingdom. Key findings: Complex problems require multiple local stakeholders to work in concert. Assets based approaches implicitly make demands on scarce time and resources. Community development approaches have many benefits, but perceptions of open‐ended investment are a barrier. The time‐limited nature of a CE intervention provides an impetus to ‘do it now’, allowing stakeholders to negotiate their investment over time and accommodating their wider commitments. Both tangible outcomes and recognition of process benefits were vital in maintaining involvement. Conclusions: CE interventions can play a key role in improving accessibility and acceptability by engaging patients, the public and practitioners in research and in the local service ecology. [ABSTRACT FROM AUTHOR]