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.

Keywords: artificial intelligence; mental health; patient perspectives; schizophrenia relapse.

Figure 1:

An example of the mental health AI technology that was shown to participants during interviews.

Figure 2:

These are three pages from the prototype. The leftmost page is the ‘About SOMPAI’ page, which explains what this tool is and provides additional information about the AI model behind it. The middle page, titled ‘Your Mental Health,’ allows users to view their prediction results. Notably, we have replaced the term ‘relapse’ with more caring and suggestive language, based on feedback from the Phase 1 interview study. The rightmost page is the ‘Review Your FB Information’ page, where users can review the Facebook posts utilized by the AI model for making predictions. The Facebook posts depicted in this figure are mock-ups, not actual posts from the participants.

Figure 3:

The three-phase study process and the summary of findings.