Service user involvement in research

Abstract

As a service user researcher with the LABILE and REDIT teams, both of whose chief investigators have a clear commitment to user involvement, I feel strongly about mental health service user involvement in clinical research. Traditionally, mental health service users were trial participants rather than being actively engaged and involved with academic and clinical researchers. Since the UK Department of Health issued guidance on such involvement in 1999, academics have started to work with service user researchers with a clear structure. Wykes discussed the issues of such guidance, its clinical implications, and training, and encouraged further involvement in her previous role as director of the Mental Health Research Network. Patterson and colleagues further discussed these issues in depth via a UK survey. A major issue is tokenism. Many academics are still involving service users for funding purposes, since funders make patient and public involvement a condition of funding but are not committed to structured service user involvement with the research team. Although the clinical researchers and service user movement have moved on, tokenism still exists. For LABILE see www.labile.org.uk For REDIT see www.redit.org.uk