How best to engage users of forensic services in research: literature review and recommendations

Guidance on service user involvement is available to help researchers working with people with mental health problems, but there is currently no comprehensive guidance relating to forensic settings where additional issues arise. This rapid review aims to summarise the currently available information on how best to engage users of forensic mental health services in the research process, and to make appropriate recommendations. Medline and five other databases were searched to May 2016 using relevant keywords and Medical Subject Headings, supplemented by a general Internet search. Eleven peer-reviewed journal papers and 12 reports or web-based documents were identified, the majority containing information derived using a qualitative methodology. Five areas of particular relevance to forensic settings were identified: power relations & vulnerability issues (including ethical treatment; informed consent; attitudes of staff and other service users; support), practical difficulties (including ‘consultation fatigue’; tokenistic inclusion; tensions over security and risk management; access; payment; co-authoring); confidentiality and transparency; language and communication and training issues. Recommendations on engaging service users in forensic mental health research are presented

‘All hands-on deck’, working together to develop UK standards for public involvement in research

Background: Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders. Main body: Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect. The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised. Conclusion: This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards

Experiences of User Involvement in Mental Health Settings: User Motivations and Benefits

Introduction: Despite guidance promoting user involvement, meaningful involvement continues to be debated within services. To effectively implement involvement, it is important to acknowledge why users devote time to such activities. Aim: This study explores user representatives’ experiences of involvement, including motivations and personal benefits. Method: Thirteen user representatives involved in activities such as staff training and interviews were recruited from a UK National Health Service mental health Trust during 2015. Themes within semi-structured interviews were developed using constructivist grounded theory analysis. Memo-writing, process and focused coding, and core categories supported development of the conceptual framework of being a user representative. Findings: Being a user representative was inextricably linked to wellness, yet staff governed opportunities. Making a difference to others and giving back were initial motivating factors. Experiences depended on feeling valued, and the theme of transition captured shifts in identity. Discussion: User representatives reported increased confidence and wellbeing when supported by staff. However, involvement triggered mental health difficulties, and identified need for regular monitoring and reflection of involvement activities and practice. Implications for practice: Services should consider coproduction, where users and staff agree together on involvement definitions. Dedicated involvement workers are crucial to supporting individual wellbeing and monitoring involvement

Process and impact of patient involvement in a systematic review of shared decision making in primary care consultations

BACKGROUND: Patient and public involvement and engagement (PPIE) in systematic reviews remains uncommon, despite the policy imperative for patient involvement in research. The aim of this study was to investigate the process and impact of collaborating with members of a patient Research User Group (RUG) on a systematic review about shared decision making around prescribing analgesia in primary care consultations. METHODS: Five members of an established patient RUG collaborated with researchers undertaking a systematic review with narrative synthesis, through workshops held at three time‐points. These addressed the following: designing the protocol, interpreting the results and planning dissemination. Support from a RUG coordinator and user support worker facilitated collaboration throughout the review process. Researchers reflected on how PPIE modified the review at each time‐point. RESULTS: RUG members identified factors important in shared decision making around analgesic prescribing additional to those initially proposed by the research team. Search terms and specific outcomes of interest were amended to reflect these additional factors. Thirty of the 39 patient‐identified factors were absent in the published literature. The categories of factors identified were used as a framework for the narrative synthesis and for reporting results. RUG members prioritized options for disseminating the results. CONCLUSION: PPIE collaboration throughout the systematic review impacted on the scope of the review, highlighting gaps in the literature that were important to patients. Impact on interpretation and dissemination of findings ensured the review directly reflected patient priorities. Challenges and strategies to facilitate PPIE involvement in systematic reviews and suggestions for future researchers are highlighted