Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jul 11, 2025
Open Peer Review Period: Jul 14, 2025 - Sep 8, 2025
Date Accepted: Oct 15, 2025
(closed for review but you can still tweet)
Analysis of China’s Largest Blood Cancer Patient Forum: Regional Inequities in Health-Seeking Behavior and Need for Enhanced Online Patient Support
ABSTRACT
Background:
Health disparities are closely tied to socioeconomic inequalities. While this relationship is well recognized in the context of traditional healthcare access, its influence on online health-seeking behaviors—such as posting questions on patient forums and seeking peer responses—remains poorly understood, particularly in the context of developing countries. Furthermore, it is unclear what types of questions are most frequently asked online and the extent to which these questions received helpful responses.
Objective:
This study examined how socioeconomic status influences online health-seeking behavior and identified unmet informational needs among lymphoma patients using data from China’s largest online blood cancer forum.
Methods:
We analyzed over 120,000 patient-initiated forum threads posted between 2012 and 2023. Regional trends in forum participation rates were examined and correlated with economic development, as measured by Gross Regional Product per capita. Second, a large language model (LLM) was utilized to classify threads into topics based on their semantic content. Additionally, a manual review was conducted to assess whether users' questions were adequately addressed within the forum discussions.
Results:
Regional forum participation rates were significantly associated with levels of regional economic development (p-value < 0.001), with highest engagement in East Coast regions. Increasing activity in less developed regions suggested a growing demand for health information. LLM-based analysis revealed that most discussions centered on medical concerns such as interpreting reports and selecting treatment plans, across all regions. However, only 37% of user questions received useful responses, underscoring persistent gaps in access to reliable information.
Conclusions:
To our knowledge, this work represents the most comprehensive real-world investigation to date of spontaneous digital engagement and information needs among cancer patients. Our findings highlight the necessity for government and healthcare providers to implement initiatives such as AI-driven information platforms and region-specific health education campaigns to bridge information gaps, reduce regional disparities, and improve patient outcomes across China. Clinical Trial: NA
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