©
Shutterstock
David Sher is a DPhil candidate at the Department of Psychiatry and the Department of Experimental Psychology. His latest paper, published in BMJ Mental Health, looked at the top 15 research priorities of people with persecutory delusions (severe paranoia) and their carers, which until this point had been unknown.
Why did you decide to do this study?
Traditionally, academics and clinicians have decided what clinical research should focus upon. This might be described as a ‘top-down’ approach to setting research priorities. Researchers and practitioners may assume that their priorities are the same as patient priorities for research; nevertheless, these priorities are often somewhat mismatched. However, in recent years, a shift towards a ‘bottom-up’ approach to setting research priorities has emerged, influenced by the James Lind Alliance in the UK, and other notable organisations which have pioneered priority-setting partnerships, or PSPs. This approach has a greater focus on what patients and their families think should be prioritised for research, whilst also considering the priorities of other key stakeholders, such as researchers, within a multi-stepped priority-setting process. The James Lind Alliance has created lists of the ‘top 10’ research priorities for many clinical areas, but so far there have been no priority-setting studies for research on severe paranoia specifically. The JLA did produce a list of the ‘top 10’ priorities for schizophrenia research. However, the JLA project was not focused on covering specific symptoms associated with schizophrenia, such as severe paranoia. Severe paranoia -like other psychotic experiences- has distinct causes, and also a different focus for treatment. We believed it was possible that severe paranoia merited its own priority setting study, especially given the particular challenges associated with mistrust (e.g. familial tension, treatment engagement, reduced willingness to engage in research which does not reflect patient priorities). I believed that research and treatment development which resonated more with priorities of patients with severe paranoia would increase the likelihood of patient engagement with it.
Researchers and practitioners may assume that their priorities are the same as patient priorities for research; nevertheless, these priorities are often somewhat mismatched.
How were people with lived experience involved?
People with lived experience were involved at every phase of this research. It felt especially important that Patient and Public Involvement (PPI) engagement was meaningful rather than being tokenistic or being separate to the project as a whole. Three people with lived experience sat on the PSP steering group, which had oversight of the study as a whole. As such, people with lived experience of persecutory delusions exercised substantial influence over all stages of the research. The steering group consisted of three people with lived experience, a family member, two research clinical psychologists, a psychiatrist, a service manager of an early intervention in psychosis service and a DPhil candidate (myself).
PPI extended to the form of study documents, the study design, its conduct, and its findings. For instance, lived experience representatives made changes to the number of questions in the first survey, and the wording of these questions. The steering group helped determine the list of questions that went into the second survey, and lived experience representatives were pivotal in deciding that a cut-off point of 15 questions would be set for the final list. Overall, 56 people who completed the first survey and 69 people who completed the second survey had lived experience of severe paranoia.
Read the full interview on the Department of Psychiatry website.