Socially Constructed Treatment Plans: Analyzing Online Peer Interactions to Understand How Patients Navigate Complex Medical Conditions

Abstract

When faced with complex and uncertain medical conditions (e.g., cancer, mental health conditions, recovery from substance dependency), millions of patients seek online peer support. In this study, we leverage content analysis of online discourse and ethnographic studies with clinicians and patient representatives to characterize how treatment plans for complex conditions are "socially constructed." Specifically, we ground online conversation on medication-assisted recovery treatment to medication guidelines and subsequently surface when and why people deviate from the clinical guidelines. We characterize the implications and effectiveness of socially constructed treatment plans through in-depth interviews with clinical experts. Finally, given the enthusiasm around AI-powered solutions for patient communication, we investigate whether and how socially constructed treatment-related knowledge is reflected in a state-of-the-art large language model (LLM). Leveraging a novel mixed-method approach, this study highlights critical research directions for patient-centered communication in online health communities.