Catch the Patient, Not the AI: Collective Sensemaking in an Online Health Community

Abstract

Patients and caregivers increasingly use artificial intelligence (AI) tools to interpret medical reports, weigh care decisions, and seek emotional support. Yet most research treats patient-facing AI as a private exchange between a user and a system. This study examines how AI-related content is taken up once users carry it back into the peer communities, using data from House086, China's largest online community for lymphoma patients and caregivers. We identified roughly 400 publicly accessible threads (2014-2026) through keyword searches and manual screening, extracted them into structured case profiles using a schema-prompted large language model, and conducted mixed-method analysis. After quality control, the verified analytic sample comprised 337 post-ChatGPT records. Members most often reported using AI for informational support, followed by second opinions and psychosocial support. Although members often introduced AI favorably, roughly one in six described feeling overwhelmed by AI output. When other members responded, they frequently engaged the poster's underlying medical or emotional intent while leaving the AI dimension unaddressed. This tendency persisted even in threads seeking triangulation between AI output and other information sources. When members did discuss the AI, they were more often cautious than endorsing. Rather than systematically auditing AI output, the community more often worked to deflate the false certainty it produced, placing a single AI answer back among multiple sources of judgment. This study argues that AI does not replace the interpretive work of online health communities, nor is it systematically audited by them. Instead, it shifts the locus of sensemaking downstream, so that the community continues to catch the person even when it does not catch the AI.

15 pages, 3 figures, 8 tables including appendices