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

TL;DR

The paper investigates how patients with a specialized disorder (Hemifacial Spasm) in China navigate health information and access top-tier medical resources amid doctor–patient asymmetries. It adopts Actor-Network Theory to map a four-unit health information network (familial, community, medical, technology) and identifies five subnetworks that patients leverage to reach high-quality care. Key findings highlight the central role of guanxi and strong personal ties in facilitating access, while technology offers empowering opportunities and notable challenges such as misinformation and varying digital literacy. The study yields practical implications for designers, clinicians, and policy-makers to reduce information and power asymmetries and improve access to radical-care options like MVD for specialized conditions.

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.

Figures (4)

• Figure 1: Study Overview. In this paper, we focus on specialized disorders, taking Hemifacial Spasm as an example to better understand how patients mitigate the information and power asymmetries in the doctor-patient relationship through health information-seeking in China. We proposed a health information-seeking network formed by four units and identified five strategies, each involving different units, utilized by patients to access top-tier medical resources.
• Figure 2: ANT Graphical Depiction. By incorporating Actor-Network Theory (ANT) during the data analysis process, we identified the main actors and roles in the health information-seeking network. We categorized these roles into four units, as shown in the figure. Additionally, we identified five strategies that form distinct strategic subnetworks within the broader health information-seeking network. The subnetwork of the intermediary strategy is depicted in the figure, and a specific example can be seen in Fig. \ref{['fig:ANT-2']}.
• Figure 3: Key Findings Overview. Using Actor-Network Theory, we identified four units, each including various roles within the health information-seeking network of Hemifacial Spasm patients. Additionally, some of these units feature internal interactions (as shown on the left). We also identified five strategies for seeking top-tier medical resources of patients with specialized disorders. Each strategy involves a unique combination of units and roles, as indicated by the letter written next to the strategy name.
• Figure 4: Example of Strategic Subnetwork. P1 was a HFS patient utilizing intermediary strategy to successfully access top-tier medical resources. In the figure, we depict her subnetwork while employing this strategy to illustrate how various actors in different units play their roles to support her journey.