As part of the work to support my PhD project I have been able to recruit and work with an advisory group of people with experiences in mental health care, we have recently had another meeting together to discuss the progress on my project and I felt this would be a valuable experience to reflect on and to think about the role of advisory groups in clinical research more generally.
I recruited the members of my advisory group through e-mailing a distribution list, held by my employing NHS trust, of individuals who had previously consented to be contacted in relation to future research projects. I asked for individuals with experience of mental health care, in any form, and a possible interest in my project to make contact with me.
The first meeting, held just after I obtained ethics approval for the project, was designed as an introduction to the project and to propose a role for the advisory group and we have just recently held our second meeting to discuss findings from a completed phase of the project.
For me this has been a very valuable experience. Meeting with an advisory group has given me the opportunity to discuss and explore the nature of my research with a group of people who have lived experience of mental health service care. This has allowed me to development arguments describing the themes from my research and to discuss them in a forum that has encouraged me to reflect on my own experiences as a psychiatrist and to think how these may have impacted on the analysis conducted in the project. For me there is a strength in being able to discuss the research with individuals not directly involved in the academic day-to-day process, but who are still interested in the potential outputs from the project. This allows me to think about the results from a different perspective to usual.
I’ve written previously about the difficulties posed by developing outcome measures for clinical trials in psychiatry and how the measures that are commonly used do not map well onto service user defined concepts of recovery. This is important because it means that when we assess the efficacy of interventions we are not addressing the needs that our clients hold to be the most important to them. To me this raises the question of the power of involving clients in research in the role of advisory groups, or more directly in action research projects, and how this can address these discrepancies.
For my current project I have opted to involve mental health service users only in the form of an advisory group and not directly in the data analysis process – excepting that they are involved in discussion of the analysis and hopefully in the preparation of reports from the project. In a way I could be criticised for this as it is possible that my project could be more powerful if service users were incorporated more directly in the process, for example by conducting interviews. But then for me this raises difficulties in that part of the purpose of a PhD is also to provide training and experience in the research methodology for the student. A potential conflict perhaps between provision of the best possible research and meeting training goals.
I hope that in future projects I will be able to work more directly with mental health service users with an interest in research. I believe that such collaborations have a powerful impact and will greatly benefit both parties understanding of the phenomena of interest.
For the moment though, for me, the opportunity to reflect on and discuss experiences and research material with a different audience is highly valuable and I hope that it will improve the quality of the work I am conducting.