奥德赛之旅：中国专科疾病患者的顶级医疗资源寻求
The Odyssey Journey: Top-Tier Medical Resource Seeking for Specialized Disorder in China
AI总结：
针对中国专科疾病患者面临的信息与权力不对称问题，本研究以面肌痉挛（HFS）为例，通过访谈和行动者网络理论分析，揭示患者健康信息及顶级医疗资源寻求历程，识别5种缓解不对称的策略，填补HCI领域对专科疾病研究的空白。
摘要：
患者获取准确的健康信息、诊断和及时治疗至关重要。然而在中国，严重失衡的医患比例加剧了医患关系中的信息与权力不对称。健康信息寻求能让患者从医生以外的渠道收集信息，是缓解这种不对称的潜在方法。尽管HCI研究主要关注常见慢性病，但本研究聚焦专科疾病——这类疾病通常为专科医生所熟悉，却不为全科医生和公众所知。我们以面肌痉挛（HFS）为例，旨在了解中国患者的健康信息及顶级医疗资源寻求历程。通过访谈3名神经外科医生和12名来自城乡的HFS患者，并应用行动者网络理论，我们揭示了健康信息寻求网络中各行动者的角色、互动及工作流程；同时识别出患者为缓解不对称、获取顶级医疗资源所采用的5种策略，并将这些策略阐释为整体网络中的子网络，还概述了其优势与挑战。
英文摘要：
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.
机构、总结、中文摘要均由AI分析而来，可能存在错误，请以论文正文为准。
