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

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.