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

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 1 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 * corresponding author 1 Top-tier medical resources and services refer to medical institutions that are wellknown for their specialized departments and are typically located in big cities. These institutions have highly qualified medical professionals and are equipped with state-ofthe-art facilities and equipment. In this paper, this mainly refers to hospitals renowned for their expertise in treating hemifacial spasm.