Learning health systems in early interventions for psychosis: Establishing consumer voices in clinical high-risk for psychosis care

Abstract

Learning health systems (LHS) are becoming established in First Episode Psychosis (FEP) treatment settings and have facilitated data driven improvements in FEP treatment and recovery outcomes. Early psychosis treatment has also expanded to provide targeted early intervention to youth who are at increased risk of developing psychosis spectrum illness, characterized as individuals at clinical high risk for psychosis (CHR-p). This has led to a national expansion of CHR-p programs and an increased focus on developing evidence-based treatment models for youth with CHR-p. The heterogeneity and high frequency of co-morbidities observed among youth with CHR-p remains a constant challenge for CHR-p programs to navigate and contributes to a lack of standardized understanding of the help seeking youth's individualized priorities for CHR-p treatment. While LHS in CHR-p treatment offer unique frameworks to address unanswered questions in this growing area, they are less established. The Psychosis Risk Assessment Feedback Survey was developed for CHR-p clinical use to directly assess individuals' experiences participating in CHR-p clinical assessments, receiving CHR-p diagnostic impressions, and discussing treatment recommendations. The aim of this commentary is to highlight the need for utilizing LHS to better understand youth with CHR-p and their caregivers experiences, provide a platform for them to have a voice at the earliest stages of treatment, introduce a novel survey method, and outline methods for integrating data back into clinical care to inform individualized assessment and treatment.