From lived experience to leadership: establishing a stakeholder advisory board to guide first-episode psychosis research and services

Advisory boards incorporating people with lived experience (PWLE) with psychosis substantially enhance first-episode psychosis (FEP) services. This study aimed to develop an advisory board including persons with lived experience (PWLE) and different stakeholders, specifically for first-episode psychosis.

To develop and pilot test a first-episode psychosis advisory board involving people with lived experience (PWLE), caregivers, and different stakeholders.

This research employed a two-phase exploratory approach and mixed method: Phase 1, with critical analysis of existing manuals on advisory board development, in-depth interviews with professionals from different backgrounds, co-design & manual development and manual evaluation. Phase 2 consists of piloting the advisory board by recruiting the members, training and piloting the board via the developed manual and finally evaluating the developed advisory board.

Phase 1 analysis, based on in-depth interviews with 19 stakeholders, revealed limited initial awareness of advisory boards. The manual was developed by adapting 2 manuals (screened from 10) and incorporating expert insights. A panel of 10 experts evaluated the manual, yielding a high overall content validity score of 83.8%, with strong scores in General Feedback (86.0%) and Content Assessment (84.7%). For Phase 2, 13 members (selected from 75 applicants) were recruited. Following a 6-month, 12-session pilot, focus groups with all 13 members emphasized the importance of training, structured processes, and effective communication.

This study addresses a critical gap by developing an inclusive advisory board using a multi-pronged approach. The findings underscore the value of a multifaceted approach. Future research should utilize established frameworks to assess board effectiveness and sustainability, ultimately strengthening FEP services. This pioneering manual serves as a template for healthcare institutions to establish advisory boards that integrate diverse stakeholders, including those with lived experiences of psychosis.

Not applicable.