Activity and views of service users involved in mental health research: UK survey

Background Optimisation of the process and outcomes of service user involvement in research is dependent on understanding current practice, challenges and opportunities. Aims To describe activities, roles and experiences of service users involved in mental health research. Method National cross-sectional online questionnaire survey, using snowball sampling. Descriptive statistics and framework analysis undertaken collaboratively with a service user reference group. Results The survey revealed a previously undescribed, highly qualified service user research workforce. Positioned within and alongside mainstream research, respondents reported drawing on extensive service use, and passion for service improvement to challenge perceived clinical academic dominance of research. The support of peers was crucial to involvement, which typically enhanced mental health but for some, pervasive stigma and scrutiny undermined self-confidence and practical difficulties challenged equitable participation. Conclusions Recognition of the service user research workforce will support the constructive amalgamation of academic and experiential expertise needed to shape and realise investment in mental health research.