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

TL;DR

This study explores how patients with specialized disorders in China seek top-tier medical resources and information, revealing strategies to overcome doctor-patient imbalances through empirical analysis of patient and doctor interactions.

Contribution

It provides novel insights into health information-seeking behaviors for specialized disorders in China using Actor-Network Theory and identifies five patient strategies for accessing top-tier medical resources.

Findings

Identified five strategies patients use to access top-tier medical resources.

Mapped the health information-seeking network and actor roles.

Highlighted advantages and challenges of different strategies.

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.