  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.
