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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.
Were there any findings or priorities that surprised you, or emerged more strongly/less so than you were expecting?
We know that people with lived experience of severe paranoia can often be distressed by the side-effects of antipsychotics. I found it notable that within the lived experience group, the top 15 most-endorsed questions were not focussed on side-effects. This may reflect that - at least as far as research priorities are concerned - people with lived experience have greater interest in questions addressing either day-to-day or foundational aspects relating to persecutory delusions.
I also found the relatively similar level of endorsement of the top 15 priorities to be of note. The most-endorsed question (‘How can families and carers be better equipped and supported to manage severe paranoia in loved ones?’) was endorsed by 44% of responders to the second survey, the tenth most-endorsed question (How can access to services for people with severe paranoia be improved?’) was endorsed by 31% of the responders, and the question which was endorsed least of the overall top 15 questions (‘How can general practitioners (GPs) and others be best supported to help people with severe paranoia in primary care?’) was endorsed by 29% of responders as being one of their ‘top 10’ research questions to be prioritised. This to me suggests that the top 15 questions are all of importance. Appraising the value of these hierarchically could therefore be somewhat misplaced. All of these questions are valuable avenues for exploration.
I always knew that PPI was important, and that the involvement of people with lived experience improves research. However, this process has really reinforced this. It has illustrated the crucial role of people with lived experience in drawing attention to important details which might otherwise be overlooked by researchers.
What has this process taught you? What will you take away from it?
I have taken away several important points from this process, but I would like to focus on two in particular. First, this process has taught me that the focus of priorities varies among stakeholder groups. It has been previously argued that whilst some researchers maintain that their research priorities are the same or similar to those of patients, this may sometimes not be the case. What was somewhat surprising (and this links to the previous question) is how strongly this research supported the notion that different stakeholders often have different research priorities. For example, the question ‘How do people with severe paranoia manage paranoid thoughts on a day-to-day basis?’ was the third highest priority for people with lived experience of severe paranoia and the second highest priority for family members of people with severe paranoia. However, it was the last priority for researchers.
Second, I always knew that PPI was important, and that the involvement of people with lived experience improves research. However, this process has really reinforced this. It has illustrated the crucial role of people with lived experience in drawing attention to important details which might otherwise be overlooked by researchers. For example, a valuable PPI suggestion was providing downloadable and printable PDF copies of surveys and information sheets, so that these could be completed by hand rather than on the internet. The purpose of this was to encourage inclusivity for people with severe paranoia who would feel uncomfortable in filling in online surveys due to concerns about online surveillance. This is something we may not have thought of without lived experience input.
How do you plan to take this research/research priorities forward – what are you going to do with these findings?
Essentially, I would like these priorities to be considered for future research in this field. Part of achieving this objective will include raising awareness of the priorities, as is being done here, within this article. These 15 research questions are interesting priorities which need to be more fully developed by researchers working alongside people with lived experience, so that they form full research studies. I am already considering how I could develop one of the research questions highly endorsed by people with lived experience into a full research study. This study would be committed to inclusion of people with lived experience throughout the research process. Overall, the process of developing a priority into a research study is exciting and feels very rewarding. Although the top 15 research priorities are presented within the article, I would also like to emphasise that the list of the top 38 research priorities is also available via the British Medical Journal (Mental Health) article, in the supplementary materials and this list has many important questions, which, if addressed, could be of benefit to people with severe paranoia.