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Background Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods Mixed methods including a two-round Delphi study with pre-specified 80% consensus criterion, with follow-up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self-selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. [ABSTRACT FROM AUTHOR]

Objective To investigate health researchers’ attitudes to involving the public in research. Background Public involvement in research is encouraged by the Department of Health in the UK. Despite this, the number of health researchers actively involving the public in research appears to be limited. There is little research specifically addressing the attitudes of health researchers towards involving the public: how they interpret the policy, what motivates and de-motivates them and what their experiences have been to date. Design A qualitative research design, using semi-structured telephone interviews. Setting and participants Fifteen purposively sampled UK-based University health researchers were the participants. Interviews were conducted over the telephone. Findings The participants suggested varying constructions of public involvement in research. Arguments based on moral and political principles and consequentialist arguments for involving the public in research were offered and most participants highlighted the potential benefits of involving the public. However, feelings of apprehension expressed by some participants imply that a number of researchers may still be uncomfortable with involving the public, as it presents a different way of working. [ABSTRACT FROM AUTHOR]

Background: Self-help approaches for mental health problems are a research and service development priority within the UK. Aim: To engage service users in the research process through a consultation exercise, seek their views on the strategies they use to manage their lives and priorities for research into self-help. Method: Service users were involved in planning and conducting a consultation event and in analysing, interpreting and disseminating the findings. Forty nine service users attended the consultation event. Notes and key points from focus groups discussions were analysed to identify main themes. Results: Five themes for service user self-help strategies were identified; managing and structuring the day; empowerment; engaging others to help yourself; physical health and well being; and spirituality. Four research priority areas in self-help were identified: the importance of user-led research; research into self-help strategies to improve physical health and well being; mapping of available services and self-help approaches; and what works and why. Conclusions: Self-help research and developments should take account of these service users' views of research priorities and the strategies they use to manage their lives. Declaration of interest: The project was initiated by Psychological Therapies Network North (PsyReNN). Funding for the venue and service user expenses was provided by the NIMHE Regional Development Centre, North East, Yorkshire and Humberside and by the Tees and North East Yorkshire Mental Health and Learning Disabilities NHS Trust. [ABSTRACT FROM AUTHOR]

Objectives To investigate how far and in what way consumers are involved in NHS research. Background There is guidance from the UK Department of Health on involving consumers in research, but it is not known how these policies have been implemented. Design A national postal survey was conducted of 884 researchers selected randomly from the National Research Register, 16 researchers registered on the INVOLVE database and 15 consumers nominated by researchers who collaborated in the same research projects. Setting The survey participants were drawn from diverse settings including NHS organizations and universities. Participants Researchers and consumers collaborating in the same projects. Main outcome measures Details of how consumers were involved and the number of projects that met previously developed consensus-derived indicators of successful consumer involvement in NHS research. Results Of the 900 researchers who were sent a postal questionnaire, 518 responded, giving a response rate of 58%. Nine of the 15 consumers responded. Eighty-eight (17%) researchers reported involving consumers, mainly as members of a project steering group, designing research instruments and/or planning or designing the research methods. Most projects met between one and four indicators. Conclusions This national survey revealed that only a small proportion of NHS researchers were actively involving consumers. This study provides a useful marker of how far the Department of Health’s policy on consumer involvement in NHS research has been implemented and in what way. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this study is to examine the health and social care information needs of people with a visual impairment; to identify the health and social care information sources used by visually-impaired people seeking information; to identify differences in the information needs of people with different visual impairments; to examine ways in which developments in information provision may help to meet the needs of visually impaired people. Design/methodology/approach – In total, 28 semi-structured interviews (face-to-face or telephone) were conducted with 31 visually impaired people living in or near Sheffield, UK. The participants included two groups: people with an age-related visual impairment, and people with a visual impairment since birth or early childhood. Framework analysis was used to analyse the findings. Findings – Four major themes were identified: health and social care information needs, sources of health and social care information, possible improvements, and "intervening variables". Practical implications – In this study only a small proportion of the health and social care information needs of visually impaired people were currently being met. There was minimal co-ordination of information between the different information providers. Visually impaired people were dependent on acquiring and seeking out additional information from a wide variety of sources. Originality/value – This paper provides new insights into the health and social care information needs of visually impaired people and their sources of information, and starts to fill gaps identified in an earlier systematic review. The paper reinforces the view that visually impaired people are a heterogeneous group, with different needs according to their visual impairments. [ABSTRACT FROM AUTHOR]

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as 'good practice'. This article presents findings from a qualitative study in the UK of researchers' experiences and views of consumer involvement in health research. Two main themes are presented. First, we explore the 'know—do gap' which relates to the tensions between researchers' perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Second, we focus on one of the reasons for this 'know—do gap', namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers. [ABSTRACT FROM AUTHOR]

Background: To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focuses on the role of expert service users as research partners, hence referred to as expert service users or PI.Methods: At every stage of the development, service users influenced the design, content and face validity of the measure, collaborating with other researchers, clinicians and stakeholders who were central to this research. Expert service users were integral to the Scientific Group which was the main decision-making body, and also provided advice through the Expert Service User Group.Results: During the theme and item generation phase (stage 1) expert service users affirmed the appropriateness of the seven domains of the Patient Reported Outcome Measure (activity, hope, belonging and relationships, self-perception, wellbeing, autonomy, and physical health). Expert service users added an extra 58 items to the pool of 180 items and commented on the results from the face and content validity testing (stage 2) of a refined pool of 88. In the item reduction and scale generation phase (stage 3), expert service users contributed to discussions concerning the ordering and clustering of the themes and items and finalised the measures. Expert service users were also involved in the implementation and dissemination of ReQoL (stage 4). Expert service users contributed to the interpretation of findings, provided inputs at every stage of the project and were key decision-makers. The challenges include additional work to make the technical materials accessible, extra time to the project timescales, including time to achieve consensus from different opinions, sometimes strongly held, and extra costs.Conclusion: This study demonstrates a successful example of how PI can be embedded in research, namely in instrument development. The rewards of doing so cannot be emphasised enough but there are challenges, albeit surmountable ones. Researchers should anticipate and address those challenges during the planning stage of the project. [ABSTRACT FROM AUTHOR]

Contemporary health policy in England places increasing emphasis on patient and public involvement (PPI) in health and health research. With regard to the latter, it has been suggested that PPI brings ‘different’ perspectives to research decision-making spaces, based on what has been referred to as ‘experiential expertise’. This article presents findings from a qualitative study of PPI in cancer research settings in England. We argue that participants highlighted specific forms of expertise in their accounts about involvement, above and beyond experiential expertise, which they felt legitimated their claims to be credible participants within cancer research settings. We report here on the various strategies by which participants sought to accomplish this and highlight, in particular, a concomitant process of ‘professionalization’ of some within our group of participants. We discuss the significance of these findings in the context of recent debates around the status of experiential expertise. [ABSTRACT FROM PUBLISHER]

Background. Little is known about service users' views of measures used to evaluate treatments in mental health. Aims. To identify the views of people with psychosis and affective disorder about the relevance and acceptability of commonly used outcome measures. Methods. Twenty-four widely used outcome measures were presented to expert groups of service users. Nominal group methods were used to develop consensus about the appropriateness of each measure. Comments made by service users about how outcomes should be assessed were also recorded. Results. Group members expressed concern about the ability of some outcome measures to capture their experiences. Patient-rated measures were assessed as more relevant and appropriate than staff-rated measures, and the need to examine negative as well as the positive effects of treatments was emphasised. Specific concerns were raised about some widely used measures including the Global Assessment of Functioning and the European Quality of Life scale. Conclusions. We consider it essential that service users' views are taken into account when selecting measures to evaluate treatment outcomes. Providing insight into views of users of mental health services, our findings serve as a starting point for discussion. [ABSTRACT FROM AUTHOR]