Involving service users in mental health research has been encouraged for many years and has been implemented to some degree in numerous areas. Increasing this type of involvement and inclusion is important for a number of reasons:
1. Without collaborative consultation with service users, it can be more difficult for mental health researchers to fully address the personal priorities and preferences of their research participants. Service user involvement can therefore be helpful in focusing and shaping research to have a more meaningful real-world impact.
2. Service users often report that they value the opportunity to meet and speak with others who have experienced mental health problems. Including service user researchers within research teams therefore increases opportunities for participants to meet others with similar experiences to themselves. In turn, this may improve participants’ personal engagement with the research process.
3. Promoting and supporting service user input is a powerful demonstration of the inherent value that lived experience of mental health problems can bring to the research process. As such, service user involvement can help to improve service users’ own self-worth, both individually and collectively. This is an especially important aim, considering that people who experience psychosis commonly report reduced self-esteem and disempowerment as a result of both their experiences and subsequent treatment.
Here at PRU we have taken a number of steps to actively involve service users in research. Several members of PRU are past or current users of services and each have led on, and contributed to, many successful research projects. Service User Consultants were also highly involved in our Recovery Programme research via the Service User Reference Group (SURG).
Since then SURG has taken on a general PRU advisory role and meets bi-monthly to offer input and advice to projects at an early stage, therefore ensuring service user views have a genuine and continuing impact. SURG provides valuable opportunities for PRU staff and visiting researchers to receive feedback and constructive critique on their proposals from the perspective of lived experience, and since it started the group has helped refine numerous aspects of the research process:
1. Commenting on the usefulness and applicability of research questions.
2. Providing feedback on assessment instruments and suggesting criteria for choosing the most appropriate ones.
3. Suggesting ways to make mental health interventions more effective and accessible.
4. Helping researchers improve the wording of official documents like lay abstracts, participant information sheets, randomisation letters, and recruitment materials.
5. Suggesting strategies for dissemination.
6. Ensuring the needs and perspectives of minority communities are properly considered, such as those relating to ethnicity and sexuality.
7. Providing input into qualitative data analysis.
The current members of PRU SURG are: Carl, Caroline, Eleanor, Heather, Jack, Sam, Wendy, Yvonne and Zac.