The Odyssey Journey: Hemifacial Spasm Patients' Top-Tier Medical Resource Seeking in China from an Actor-Network Perspective

Health information-seeking behaviors are critical for individuals managing illnesses, especially in cases like hemifacial spasm (HFS), a condition familiar to specialists but not to general practitioners and the broader public. The limited awareness of HFS often leads to scarce online resources for self-diagnosis and a heightened risk of misdiagnosis. In China, the imbalance in the doctor-to-patient ratio and HFS's low incidence exacerbate information and power asymmetries within doctor-patient relationship. While HCI and CSCW research predominantly focuses on more common chronic conditions, our study delves into HFS, aiming to deepen the understanding of HFS patients' health information-seeking journeys in China, as well as exploring how these patients utilize various stakeholders and online resources to overcome asymmetries in the doctor-patient relationship and access top-tier medical resources. Through interviews with three neurosurgeons and 12 HFS patients from both rural and urban areas, and applying Actor-Network Theory, we offer empirical insights into the interactions and workflows within the health information-seeking network. Our analysis identified five strategies HFS patients adopted to access top-tier medical resources. We also propose design opportunities for technology to aid patients in overcoming the challenges encountered during their health information-seeking journey.