Patient Perspectives on AI-Driven Predictions of Schizophrenia Relapses: Understanding Concerns and Opportunities for Self-Care and Treatment

Abstract

Early detection and intervention for relapse is important in the treatment of schizophrenia spectrum disorders. Researchers have developed AI models to predict relapse from patient-contributed data like social media. However, these models face challenges, including misalignment with practice and ethical issues related to transparency, accountability, and potential harm. Furthermore, how patients who have recovered from schizophrenia view these AI models has been underexplored. To address this gap, we first conducted semi-structured interviews with 28 patients and reflexive thematic analysis, which revealed a disconnect between AI predictions and patient experience, and the importance of the social aspect of relapse detection. In response, we developed a prototype that used patients' Facebook data to predict relapse. Feedback from seven patients highlighted the potential for AI to foster collaboration between patients and their support systems, and to encourage self-reflection. Our work provides insights into human-AI interaction and suggests ways to empower people with schizophrenia.