VOICE - Patient and Public Involvement and Engagement with People at Ultra-High Risk for Psychosis (UHR) - A "HOW TO" Guide for Researchers

This ‘How-to’ Guide supports researchers setting up participatory research projects that actively involve individuals with lived experience and patients as co-researchers in projects. With this guide, we intend to lead readers through each step of a participatory research project, provide principles and considerations as well as checklists and specific recommendations for involving co-researchers with UHR-experience in research. 

The concept of “ultra-high risk for psychosis” (UHR) aims to detect a risk for developing a later psychosis in help-seeking and symptomatic individuals at an early stage. Within the UHR-concept, distressing experiences below the threshold of manifest psychosis are defined as “attenuated psychotic symptoms” (APS) and “brief limited psychotic symptoms” (BLIPS) with respect to intensity or frequency criteria (Yung et al., 2003). 

This guide was co-created with co-researchers with lived experience and psychiatrists within the VOICE project, a participatory research project. The VOICE project has created new perspectives on diagnosis, treatment and research concerning the condition of “ultra-high risk for psychosis” (UHR) by including individuals with lived UHR-experience as co-researchers. By reflecting on current evidence-based guidelines on detection and treatment, unmet needs were identified and new insights into this state gained.