The Odyssey Journey: Top-Tier Medical Resource Seeking for Specialized Disorder in China

2024-06-01

AI Summary

Severe physician–patient ratio imbalances in China exacerbate information and power asymmetries, particularly for rare, specialty conditions such as hemifacial spasm (HFS). Method: Drawing on in-depth interviews with 12 patients and 3 neurosurgeons, this study applies Actor-Network Theory (ANT) modeling, qualitative coding, and relational analysis—the first systematic ANT-based investigation of health information seeking for specialty diseases in China. Contribution/Results: It uncovers the actual, multi-tiered pathways urban and rural patients employ to access high-quality care and identifies a networked decision-making mechanism. We propose a multi-actor health information network model integrating patients, caregivers, clinicians, digital platforms, and policy actors; derive five strategic subnetworks that mitigate asymmetry; and specify their contextual applicability, advantages, and implementation barriers. This work fills an empirical gap in HCI research on information behavior for non-chronic, specialty diseases and delivers an actionable theoretical framework for digital health interventions.

Technology Category

• Knowledge Representation and Reasoning: Diagnosis and Abductive Reasoning
• Game Theory and Economic Paradigms: Imperfect Information
• Application Domains: Humanities & Computational Social Science

Application Category

• Social Networks and Social Media: Analysis of web-mediated communications, communities, and crowds
• Economics, Online Markets and Human Computation: Incentives in network design for Web infrastructures and ecosystems
• User Modeling, Personalization and Recommendation: Accountability, Transparency, and Ethics for personalization

Abstract

It is pivotal for patients to receive accurate health information, diagnoses, and timely treatments. However, in China, the significant imbalanced doctor-to-patient ratio intensifies the information and power asymmetries in doctor-patient relationships. Health information-seeking, which enables patients to collect information from sources beyond doctors, is a potential approach to mitigate these asymmetries. While HCI research predominantly focuses on common chronic conditions, our study focuses on specialized disorders, which are often familiar to specialists but not to general practitioners and the public. With Hemifacial Spasm (HFS) as an example, we aim to understand patients' health information and top-tier medical resource seeking journeys in China. Through interviews with three neurosurgeons and 12 HFS patients from rural and urban areas, and applying Actor-Network Theory, we provide empirical insights into the roles, interactions, and workflows of various actors in the health information-seeking network. We also identified five strategies patients adopted to mitigate asymmetries and access top-tier medical resources, illustrating these strategies as subnetworks within the broader health information-seeking network and outlining their advantages and challenges.

Problem

• Address health information-seeking for specialized disorders
• Mitigate doctor-patient information asymmetries in China
• Explore strategies for accessing top-tier medical resources

Innovation

• Actor-Network Theory analysis
• health information-seeking strategies
• specialized disorder focus