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

Patterson, Susan, Trite, Jenny and Weaver, Tim ORCID: https://orcid.org/0000-0002-3437-3556 (2014) Activity and views of service users involved in mental health research: UK survey. British Journal of Psychiatry, 205 (1) . pp. 68-75. ISSN 0007-1250 [Article] (doi:10.1192/bjp.bp.113.128637)

Abstract

Background: Optimisation of the process and outcomes of user involvement in research is dependent upon understanding current practice, challenges and opportunities.

Aims: To describe activities, roles and experiences of service users involved 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 hitherto un-described, 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. 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 constructive amalgamation of academic and experiential expertise needed to shape and realize investment in mental health research.

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