Background This project is one component of a larger project which, using computational neuropsychiatry, aims to understand what leads patients unilaterally to disengage from psychotherapy. Computational Neuropsychiatry is a promising new field which has yielded great gains in many areas. However, it has not fulfilled it early promise and it is suggested that one reason is because computational modelling has lacked input from Experts-by experience who can enhance the validity of the model by contributing their personal (real world) insights.
Aims (i) to assess the feasibility of recruiting a specific group of Experts-by-experience i.e. people with Functional Neurological Disorder (FND) to help us to design and refine a Computational Neuropsychiatry task (ii) to develop guidelines for future recruitment of Experts-by-experience to collaborate on computational neuropsychiatry tasks, drawing on this specific example of people with FND.
Methods The Experts-by-experience were recruited from amongst the membership of the charity FND Hope International, the first and only global charity for people with Functional Neurological Disorder. We held four group meetings on zoom. The meetings had a number of themes including (i) education e.g. what is computational neuropsychiatry?, (ii) the political and cultural context e.g. how collaboration with Experts-by-experience can reduce power inequalities in medical research (iii) the process e.g. an enquiry into how best to engage Experts-by-experience (iv) catharsis e.g. an opportunity for the participants to contribute both as representatives or advocates of the wider group of people with FND and as themselves i.e. sharing their unique personal experience. Two of the researchers who convened the groups (CS & MM) took extensive notes during the meetings and these notes were the raw data.
Analysis The data were transcribed and analysed using qualitative data analysis methods i.e. to identify and code the key themes.
Results Our experts-by-experience were intrigued by the computational neuropsychiatry task and by the contextual background i.e. how people with FND can be empowered to collaborate on and to co-facilitate clinical research. They contributed ideas on how people with FND can input. They shared their personal stories of their interaction with healthcare professionals, both positive and less successful experiences including ruptures in the therapeutic alliance and times when they had decided unilaterally to disengage from therapy. Key themes emerging e.g. the (crucial) need to take time to develop trust and forge a strong (collaborative) working alliance will be used to develop guidelines for future research collaboration with Experts-by experience.
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