Ka I Chanckinicola@gmail.com0009-0001-4560-1702Global Innovation Exchange (GIX) Insitute, Tsinghua UniversityChina,Yuntao Wangyuntaowang@tsinghua.edu.cn0000-0002-4249-8893Department of Computer Science and Technology, Tsinghua UniversityGlobal Innovation Exchange (GIX) Insitute, Tsinghua UniversityChina,Siying Husiyinghu-c@my.cityu.edu.hk0000-0002-3824-2801Department of Computer Science, City University of Hong KongChina,Bo HeiPeking University People’s HospitalChina,Zhicong Luzhiconlu@cityu.edu.hk0000-0002-7761-6351Department of Computer Science, City University of Hong KongChina,Pei-Luen Patrick Raurpl@mail.tsinghua.edu.cn0000-0002-5713-8612Department of Industrial Engineering, Tsinghua UniversityChinaandYuanchun Shishiyc@tsinghua.edu.cn0000-0003-2273-6927Department of Computer science and Technology, Tsinghua UniversityChina
Abstract.
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.
Health Information Seeking, Hemifacial Spasm, Actor-Network Theory
![The Odyssey Journey: Hemifacial Spasm Patients’ Top-Tier Medical Resource Seeking in China from an Actor-Network Perspective (1) The Odyssey Journey: Hemifacial Spasm Patients’ Top-Tier Medical Resource Seeking in China from an Actor-Network Perspective (1)](https://i0.wp.com/arxiv.org/html/2406.00337v1/extracted/5636319/figures/teaser7.png)
1. Introduction
Individuals who become aware of abnormalities in their bodies typically seek and utilize various health information resources, such as healthcare systems, fellow patients, friends, family, and the Internet, to better understand their disorders and make health-related decisions. Particularly, doctors play a crucial and authoritative role in the context of patients seeking medical resources (Cutilli, 2010) , as they are generally regarded as common and reliable sources of accurate information and adequate treatment options.However, in China, the doctor-to-patient ratio is highly imbalanced111China has 1.98 medical doctors, including generalist and specialist medical practitioners, per 1,000 of the population, falling short of the World Health Organization’s standard for primary healthcare needs, which is more than 2.3 health workers per 1,000 (who, [n. d.]).. There is seldom a situation where doctors lose their jobs due to a lack of patients. Moreover, it can be challenging for some patients to access top-tier medical professionals. Often, they can only consult with doctors within their reach and must rely on the authority and health information those doctors provide, without the ability to verify it due to limited information sources. This scenario contributes to information and power asymmetries in the doctor-patient relationship.
Extensive research within the HCI and CSCW communities has been dedicated to understanding the practice and design of tools supporting health information work in the context of common chronic illnesses, such as diabetes, dementia, cancers (Desai etal., 2019; Maddali etal., 2022; Jacobs etal., 2018; Burgess etal., 2019), which are generally well-known to the public. In contrast, studies focusing on rare diseases (MacLeod etal., 2015, 2017; Nielsen etal., 2023) and specific disorders (Sannon etal., 2019; McKillop etal., 2018; Pichon etal., 2021) are fewer. There is a significant gap in understanding conditions that are familiar to specialized doctors but not to the general public, such as hemifacial spasm (HFS). Unlike common chronic conditions, HFS is predominantly found within the specialized neurosurgery field, leading to limited public exposure and access to relevant health information. The uncommonness of HFS, coupled with its similarities to facial paralysis, increases the risk of misdiagnosis and misinformation, making it challenging for patients to find adequate and satisfactory treatment options. This issue is particularly acute in rural areas, where lower health literacy levels may impede individuals’ ability to obtain proper health information (Aljassim and Ostini, 2020). Consequently, these factors exacerbate the gap between doctors’ authoritative and professional knowledge and patients’ limited information sources, intensifying the information and power asymmetries in doctor-patient relationships.
Online sources are increasingly utilized, with patients commonly turning to search engines and social media for self-diagnosis and exploring potential treatments (DeChoudhury etal., 2014; Wang etal., 2012). The act of seeking health information online can lead to significant offline impacts, affecting patients’ emotions and influencing their health-related decisions (Chi etal., 2020; Kuhlthau, 1991; Lambert and Loiselle, 2007; Ogan etal., 2008; Fox and Rainie, 2002). However, the mean duration of symptoms for HFS patients is notably long, averaging 11.4 ± 8.5 years (range: 0.5–53 years) (Wang and Jankovic, 1998). This extended period might partly be due to the absence of pain in the early stages of HFS, which can lead to underestimating the severity of the condition. Additionally, many HFS patients endure a prolonged experience with the disorder before opting for MVD surgery, the only radical treatment option for HFS. This indicates that acquiring necessary health information and medical resources can be a lengthy process for many patients.
HFS patients often undergo a long journey before they can access medical treatments. Our research aims to understand how these patients, leveraging various approaches and stakeholders, such as actively seeking information upon raising questions, utilizing the internet, and engaging in social networking, use these resources as a means of empowerment. This empowerment is critical in overcoming the information and power asymmetries that exist in doctor-patient relationships, thereby improving their access to health information and medical resources, particularly to top-tier medical services. It is significant to explore how HFS patients navigate the needed health information, gain access to effective treatment options and channels leading to top-tier medical resources.
This study employs qualitative research methods to explore the health information and top-tier medical resource seeking journey of HFS patients in China. We conducted semi-structured interviews with three neurosurgeons and 12 HFS patients from rural and urban areas of China. By applying Actor-Network Theory (ANT) in our analysis, we were able to identify and comprehend the various actors involved, including both human and non-human entities, which also helped us to uncover how these actors collaborate and interact, thereby forming stable and effective health information channels. Furthermore, we observed the various strategies employed within this health information-seeking network. This analytical approach highlights how technology and social networks can be leveraged to diversify and strengthen information channels, thereby providing patients with broader and more effective access to various treatment resources.
We contribute to the HCI and CSCW communities by building upon existing research on health information-seeking in a broader context. Our research introduces a novel information-seeking perspective by focusing on disorders that, while common among specialized doctors, are uncommon among general patients and health practitioners, i.e. Hemifacial Spasm (HFS). This particular focus sheds light on the exacerbated information and power asymmetries in doctor-patient relationships, allowing us to delve deeper into the strategies that patients and stakeholders collaborate on and utilize to access top-tier medical resources. Our contributions are threefold:
1. We provide empirical evidence and employ Actor-Network Theory (ANT) to elucidate the roles, interactions, and workflows of various actors within the HFS patients’ health information-seeking network.
2. We identify five strategies utilized by HFS patients from both urban and rural areas in China to access top-tier medical resources. We illustrated these strategies as subnetworks within the broader health information-seeking network. Additionally, we detailed the advantages and challenges associated with each of these strategies.
3. We outline design opportunities for technologies that could potentially assist in addressing the challenges faced by HFS patients in their adopted strategies.
2. Background and Related Work
In this section, we first provide a background on hemifacial spasm and the doctor-patient relationships within the Chinese context. This includes a concise overview of hemifacial spasm, its unique characteristics, and its differentiation from common chronic conditions. We then delve into the particularities of the Chinese healthcare situation, highlighting the asymmetries and challenges prevalent in doctor-patient relationships. Subsequently, we summarize key literature on health information-seeking behaviors. This review allows us to understand the historical focus of health information-seeking behaviors and how individuals navigate and collaborate within the healthcare system. Finally, we introduce the Actor-Network Theory (ANT), which not only informed but also inspired our study. We discuss how ANT contributes to and enhances our methodological approach, providing a deeper understanding of the dynamics in health information-seeking networks.
2.1. Hemifacial Spasm (HFS)
Hemifacial spasm (HFS) is a chronic disorder characterized by unilateral tonic and clonic contractions of facial muscles innervated by the facial nerve (Tan etal., 2002), often originating from the orbicularis oculi muscle (Wang and Jankovic, 1998). The annual incidence rate of HFS is 0.78 per 100,000 (Auger and Whisnant, 1990). While HFS is not considered fatal, it can significantly impact a patient’s quality of life, leading to social discomfort and awkwardness, emotional distress, and functional limitations (Reimer etal., 2005). HFS can be accentuated during speaking and eating, as well as psychological tension (Abbruzzese etal., 2011; Wilkins, 1991). It is important to note that attributing these symptoms to stress and anxiety can potentially lead to underdiagnosis of HFS.
The treatment options for HFS include drug therapy, botox injections, and microvascular decompression (MVD) surgery. Among these, MVD is the only radical treatment with a high success rate for addressing the underlying cause of HFS (Montava etal., 2016). While medications offer limited and temporary relief, and botox injections may have adverse effects (Wang and Jankovic, 1998). However, MVD carries inherent risks and potential complications, with approximately one-third of patients (33%±8%) experiencing a delayed cure in post-operation (Sindou and Mercier, 2018). Additionally, early surgical intervention is preferred because long-term HFS patients tend to have significantly poorer postoperative outcomes (Rosenstengel etal., 2012).
In summary, HFS is an uncommon chronic condition that easily remains undetected in the early stages. Its minimal impact on daily life and the absence of pain in the early symptoms can lead patients to underestimate the seriousness of HFS. Over time, however, the condition progresses and can significantly affect the quality of life, though it is not considered life-threatening. Surgery is the only radical and definitive treatment option, with early intervention often recommended to improve postoperative outcomes.
2.2. Doctor-Patient Relationships in Chinese Context
The doctor-patient relationship is pivotal in ensuring patients receive accurate health information, diagnoses, and timely treatments. However, China’s situation is distinct, especially when compared to developed countries like the U.S., the U.K., and Japan. These high-income countries typically have around 10 nurses and 3 doctors per 1000 people, while China has only about 1.3 nurses and 1.7 doctors (Qin etal., 2013).This shortage of healthcare professionals in China may be attributed to the relatively unattractive income, unlike in developed western countries where being a doctor is a high-income occupation with significant returns on professional education (Nicholson etal., 2008).
In China, as society progresses, people are becoming more conscious of their health, leading to increased demand for medical resources. However, this demand is met with challenges such as power and information asymmetries, along with unequal allocation of medical resources between rural and urban areas, intensifying the tension in doctor-patient relationships (Zhu etal., 2019). Most developing countries, characterized by high power distance, often place doctors in a dominant position during consultations. Patients may feel it is not their place to question their health or express their feelings, leading to brief consultations dominated by the doctor’s decisions, with little room for unexpected information exchange (Jacobs and Wursten, 2019).This dynamic contributes to the power asymmetry in doctor-patient relationships, with patients hesitant to challenge the authority of doctors. Moreover, doctors dominate the consultation in terms of knowledge, skills, time, and resources, which exacerbates the knowledge gap and information asymmetry (Zhang, 2023). As a result, doctor-patient relationships in China tend towards paternalism, with patients placing a high degree of trust in doctors, expecting them to make the right decisions about their health.
2.3. Health Information Seeking
Health information seeking refers to the methods individuals use to acquire information related to health, illness, health promotion, and health risks (Lambert and Loiselle, 2007). It is not a one-way process as individuals encounter new information about their health, their understanding of their experiences undergoes changes (Kleinman etal., 1978). These shifts in understanding also impact the subsequent health information individuals seek, thus influencing their decision-making regarding their health, healthcare, and well-being. Despite the abundance of health information available, many people lose their lives or suffer severe complications from chronic disorders due to a lack of knowledge about prevention methods (Lalazaryan etal., 2014). Therefore, exploring patients’ information seeking behaviors and patterns can yield valuable insights into strategies for effectively conveying information to patients, thereby enhancing their self-management and preventing disorder progression.
Individuals access health information through various channels. Apart from healthcare systems, they also seek information from friends, family, and the Internet. Patients, caregivers, and the general population increasingly turn to the internet to seek health information (Fuertes etal., 2007), which can significantly influence patient beliefs and actions (Barker, 2008; Davison and Pennebaker, 2013). Patients are exposed to information about illness experiences through search engines, social media, online communities, which offer advantages such as privacy, real-time interaction, and archived health information, facilitating patient knowledge and self-diagnosis. There are also barriers to online health information seeking. These barriers include low health literacy, limited information retrieval skills, unreliable and elusive health information, platform censorship, and misinformation (Jia etal., 2021; Augustaitis etal., 2021).
Collaboration in information work plays an important role in helping patients make sense of their health conditions and effectively access the resources available within the healthcare system. Patients often engage in collaborative efforts with medical practitioners, family, friends, and fellow patients (Burgess etal., 2022; Klasnja etal., 2010). Additionally, health information seeking is not only beneficial for acquiring knowledge but also serves as a valuable approach for individuals when they navigate the healthcare service, particularly during critical circ*mstances such as emergency visits (Gui etal., 2018; Park and Chen, 2017).
2.4. Actor-Network Theory (ANT)
Actor-network theory (ANT), a theoretical and methodological approach to social theory, developed in the 1980s primarily by Michel Callon, John Law, and Bruno Latour (Law, 1986; Law and Hassard, 1999; Latour, 2011), posits that everything, including both human and non-human entities, which are regarded as actors, influences or perturbs the activity of a sociotechnical system (Crawford, 2020). Furthermore, ANT contends that no external social force exists outside these relationships, and phenomena do not exist independently, thus the characteristics approach of ANT is to ”describe” rather than ”explain” social phenomena (Latour, 2007). ANT also challenges traditional methods by defining non-humans as actors equal to humans. For instance, in its early stages, ANT explored how the growth and structure of knowledge could be analyzed and interpreted through the interactions of actors and networks (Law and Lodge, 1984), offering a novel perspective for practical application. Over time, ANT has gained popularity as a tool for analysis in various fields, such as organizational analysis, informatics, health studies, and more. Although ANT have faced both embrace and critique in the 21st century, it remains a valuable form of inquiry (Whittle and Spicer, 2008).
Using ANT, we can gain a better understanding of sociotechnical systems. This approach has been effectively utilized within the HCI and CSCW community, where ANT has informed a range of studies. These include participatory design (Gartner and Wagner, 1996; DePaula, 2004), examining the role of design materials (Tholander etal., 2012; Fuchsberger etal., 2013), the development of cyberstructures (Randall etal., 2015), the use of mobile media in India (Kumar and Rangaswamy, 2013), parenting practices among Latino immigrants (Wong-Villacres etal., 2019), the asymmetries in the gig economy (Kinder etal., 2019), and the care for breast cancer survivors (Lefkowitz, 2022). These diverse applications demonstrate the effectiveness of ANT in understanding the creation and maintenance of various sociotechnical systems.
Inspired by prior HCI and CSCW research, our study adopts the ANT perspective to explore the dynamic interactions of patients in a network of individuals and resources as they navigate the information-seeking pathways to the access of top-tier medical services. To analyze this sociotechnical system and identify patient information-seeking strategies, we adopt the ANT perspective. In ANT, non-human entities, typically referring to creatures, objects, transportation devices, texts, etc.,—excluding human beings and other symbolic objects in nature (Sayes, 2014)—are valued equally. ANT provides a uniform framework ”regardless of the unit of analysis” (Ciborra, 2000), encouraging ”analytical impartiality” in dealing with both human and non-human entities. This approach allows for equal analysis of the myriad human and non-human roles within the network (Thebault-Spieker etal., 2017). Moreover, we can systematically view the information flow and the information-seeking strategies of actors by the utilization of ANT. Our focus includes the tensions and alliances between patients, doctors, social networks, and technology. This helps us understand the strategies patients use to overcome asymmetries in doctor-patient relationships, as well as delving into the connections and interactions between actors, fostering in a comprehensive actor-network.
In our study, we utilized the actor-network research framework developed by Kraal etal. (2011), which is grounded in Callon’s sociology of translation and incorporates terminology from both Callon and Latour (Callon, 1984). This research framework interprets Callon’s ”moments of translation” into four distinct steps: ”interessem*nt”, ”enrollment”, ”points of passage”, and the ”trial of strength”. Guided by these steps, our findings shed light on the roles of various actors, including technology, in either facilitating or impeding patients’ access to information. Furthermore, our findings illuminates the roles of various actors, including technology, in either facilitating or hindering patients’ access to information, as well as the circulation of health information among these connections. This comprehensive examination allows us to identify the strategies HFS patients adopted to access top-tier medical resources, while also revealing both challenges and opportunities in designing technologies that can expand and strengthen these information channels. Such advancements are crucial in enabling patients to effectively navigate a broader range of treatment options and gain access to top-tier medical care.
3. Methods
To better understand the health information-seeking experiences and practices among HFS patients, which are common to doctors while uncommon to patients in China, our study investigates the following research questions:
RQ1: What sources of health information do HFS patients seek, and what strategies do they adopt to acquire top-tier medical resources?
RQ2: How do various stakeholders empower HFS patients to overcome the power and information asymmetries in the doctor-patient relationship?
To explore these questions, we referred to the methodology in Gui etal. (2018) and Lefkowitz (2022), for conducting our interviews and qualitative analysis of the interview data. Semi-structured interviews were conducted with three neurosurgeons and 12 patients in China.
3.1. Interviews
All interviews were conducted in Mandarin and were audio-recorded with the participants’ consent. Subsequently, the recordings were transcribed by the first author, a native Mandarin speaker, who conducted all the interviews. Participants were fully debriefed regarding the study’s purpose and received monetary compensation after data collection. This study received approval from the university’s Institutional Review Board (IRB).
Doctor-Centered Interview.Semi-structured interviews were initially conducted with three neurosurgeons (denoted as D1-D3). All neurosurgeons are specialized medical practitioners with extensive experience, working in top-tier hospitals, and possessing a minimum of five years of professional qualifications. The interviews were designed to gather information from a professional perspective and to gain an overview of the patients’ situations. Topics discussed included patients’ general circ*mstances, their experiences within the healthcare process, and the potential challenges they might face, as seen from the professional viewpoint. All interviews were conducted remotely via audio calls in July 2023, lasted from 0.5 to 1 hour.
Patient-Centered Interview.We subsequently conducted semi-structured interviews with 12 individuals diagnosed with HFS from both rural and urban areas (denoted as P1-P12, Table 1). Among them, P1-P11 had undergone microvascular decompression (MVD) surgery in the top-tier hospital with nationally recognized neurosurgery expert, which is the only existing radical treatment for HFS. However, P12, despite having sufficient information about HFS and access to treatment at a top-tier hospital, was hesitant about undergoing the surgery. Participants living in cities were categorized as urban, while those in counties and countryside areas were categorized as rural. All interviews were conducted remotely using audio calls in August 2023, with the exception of P2 and P3. Interviews with these two participants were conducted using text and voice messages due to P2’s limited proficiency in Mandarin and P3’s Hyperacusis222Hyperacusis is a condition that increases sensitivity to sound and reduces tolerance for ambient noise, making phone calls intolerable (Tyler etal., 2014).. Each interview lasted from 0.5 to 1.5 hours, covering topics such as their early-stage experiences with HFS, awareness of their condition, methods used to seek health information and diagnosis, pathways to accessing medical resources, challenges encountered in the process, and the stakeholders involved in their journey.
\Description
Table 1 presents detailed information of the 12 patient participants in the semi-structured interviews, illustrating each participant’s ID, sex, age, duration of hemifacial spasm, whether the patient has undergone MVD surgery, location, education level, and occupation.IDSex/AgeDuration of HFSUndergone MVD surgeryLocationEducation levelOccupationP1F/478 yearsYesUrbanBachelorEngineerP2F/522 yearsYesUrbanMiddle schoolRetireeP3F/708 yearsYesUrbanAssociateRetireeP4M/556 yearsYesRuralElementary schoolRestaurant ownerP5F/5411 yearsYesUrbanTechnical secondary schoolRetireeP6M/481.5 yearsYesRuralBachelorGovernment employeeP7F/549 monthsYesRuralHigh schoolRetireeP8F/703 yearsYesRuralNo formal educationFarmerP9M/312.5 yearsYesRuralElementary schoolFarmerP10F/372 yearsYesUrbanAssociateWorkerP11F/6315 yearsYesUrbanHigh schoolRetireeP12M/504 yearsNoRuralBachelorGovernment employee
3.2. Recruitment
Participants were recruited through direct contacts and snowball sampling. However, we encountered several challenges during this process. Many patients expressed skepticism about our intentions, and some were reluctant to share their experiences because they regarded their illness experience as private or traumatic due to postoperative complications. Additionally, some patients from rural areas could not speak Mandarin and had low literacy refused to be interviewed. Others declined participation due to their work-related time constraints. These factors contributed to the initial refusals to our interview invitation. For those who expressed interest, we communicated further and conducted interviews with them through WeChat333A Chinese instant messaging app.. Despite our efforts, their scheduling difficulties led to further refusals. Although these challenges constrained our ability to recruit a larger number of participants, the participants recruited were diverse in terms of locations, educational levels, occupations, and socio-economic statuses.
3.3. Data Collection and Analysis
In this experiment, interview data was primarily collected from two groups: doctors and patients. All interviews were recorded, and these recordings were transcribed into text-based data for analysis purposes. The interview transcripts were analyzed using an open coding method (Strauss and Corbin, 1998). Two native Mandarin-speaking authors independently organized the specific language and concepts described by the participants into broader themes through an interpretative qualitative analysis of the interview transcripts. Subsequently, they met to reach a consensus on these codes. Given that a health information-seeking network can encompass a variety of entities, both human and non-human, we opted to use ANT as our analytical framework (Kraal etal., 2011). This guided a second iteration of coding, during which we focused on identifying the human and non-human entities, along with their motivations and interactions within the network. All the codes were translated into English, and discussed by the research team to reached a consensus.
4. Findings
Through our qualitative analysis based on the research framework of actor-network theory (Kraal etal., 2011), we identified the key actors within the health information-seeking network. Furthermore, this network is delineated by connections that trace the pathway of health information-seeking, ranging from initial illness awareness to the pursuit of top-tier healthcare practices among HFS patients.
4.1. United-Actors and their Interactions in Health Information-Seeking Network
An actor-network consists of a variety of heterogeneous actors who come together to form a network, based on connections and interactions that align with mutual interests. Our actor-network represents the workflow of health information disseminated through a diverse set of channels. We have categorized the actors within this network into distinct units, based on their nature and similarities. These units are identified as the Familial Unit, the Medical Unit, the Community Unit, and the Technology.
4.1.1. The Role of the Familial Unit
In the health information-seeking network, two members of familial unit are central actors: patients themselves and patient’s family members. We first introduce the roles of each actor and then describe their characteristics and connections between them by cases.
The Familial Unit–Patient.The onset age of HFS patients are around 48.5 ± 14.1 years old (Wang and Jankovic, 1998), ranging from the middle-aged to older adults. Consistent with other studies (Mitzner etal., 2010), we found that some older adult patients are reluctant to use technology, often perceiving it as untrustworthy or unreliable. Consequently, HFS patients in our study have various technology acceptance. We have identified three distinct roles of patients within the network during health information-seeking practices. The first is the Proactive Information-Seeking Patient, who independently gathers information, whether online or offline, and eventually accesses the necessary information mostly by themselves. However, even some of these proactive patients are strive to the search of information, they sometimes need the assistance of their family members to access health information and medical resources. The second role is the Low Technological Literacy Patient, typically older adults who distrust online information or lack opportunities to use technology due to limited external contact. They usually rely on their children for health information and prefer direct medical consultation for health issues. The third role is the Experienced Patient, who has other chronic conditions and a history of hospitalization, making them more attentive to their health status and aware of HFS symptoms earlier, often consulting healthcare professionals directly.
The Familial Unit–Patient’s Family Members.Family members of HFS patients, either partners or children, assume two roles in the health information-seeking network: Direct Agent and Companion. Direct Agents typically support technology-skeptic patients, acting as mediators who ”transform, translate, distort, and modify the meaning of elements they are supposed to carry” (Latour, 2007). Since these patients do not seek health information online, their family members assist in gathering both online and offline information. Moreover, in China, accessing healthcare providers and making appointments often involves using mobile phones, a task usually undertaken by family members of technology-skeptic patients. Conversely, Companions align with proactive information-seeking patients, aiding them in information search but not dominating the process. They provide encouragement and support throughout the patients’ journey against the disorder.
P1, a 47-year-old urban patient with 8 years of HFS experience, enacted the proactive information-seeking patient. She initially learned that she had HFS while cannot find the cause of it through internet search engines and has tried various treatments, including folk remedies (i.e. sticking a white paper on eyelid) learnt from her colleagues. Her husband, acting as her companion, assists in inquiring health information within his own social network, as well as providing continuous support from the early stage of illness to post-operative care.
On the other hand, patients’ children often exhibit greater proficiency with technology and may actively seek health information online on behalf of their parents. For instance, P8, a 70-year-old living in a rural area with 3 years of HFS experience, also fits the role of a low technological literacy patient. Her primary language is a local dialect and can barely speak Mandarin, and she usually interacts only with her husband. She uses a basic mobile phone, designed with simplicity for older adults, featuring only a keyboard and screen. Through this device, she regularly contacts her daughter.
Her daughter plays a crucial role as her direct agent. P8 does not know which hospital she visits; she trusts and follows wherever her daughter takes her. Consequently, all the health information P8 receives is either directly from her daughter or from medical professionals. P8’s reliance on her daughter for navigating the healthcare system highlights the significant role family members play in the health information-seeking process, especially for those less familiar with modern technology.
P3, a 70-year-old urban resident living with HFS for 8 years, enacted the low technological literacy patient. She rarely uses a mobile phone and avoids online health information, preferring direct medical consultation. She held the belief that consulting doctors directly was the most straightforward and effective approach for patients to acquire professional medical advice. In her view, only doctors can provide valuable insights into a patient’s health condition, rendering online health information searches insufficient and even superfluous because she does not see the necessity. To her, online resources were limited to offering symptomatic guidance and often lacked completeness and accuracy. She articulated her stance clearly:
”I directly go to the hospital to see a doctor when I’m ill, and I haven’t searched online. I simply don’t see the need; I believe consulting a doctor is more direct. Searching online, in my opinion, isn’t very helpful. When you’re ill, you need to see a doctor. The doctor will tell you how to treat it. Online information might give you some idea about the symptoms, but it’s often incomplete and not entirely reliable.”
Her daughter, a physician at a reputable hospital, enacted the role of a direct agent, taking responsibility for managing her mother’s health conditions and seeking medical advice on her behalf. All the health information P3 received was either directly from her daughter or other medical professionals. Eventually, it was her daughter who introduced her to a leading resource for HFS surgery within the top-tier medical service and persuaded her to undergo the surgery.
Experienced patients are individuals who have already been diagnosed with other health conditions, leading them to be more attentive to any changes in their health status. P11, a 63-year-old patient living in an urban area, has been living with HFS for 15 years. Prior to her HFS diagnosis, she was diagnosed with several other disorders. As a result, she meticulously records her health conditions, taking daily notes to better understand her body:
”After being diagnosed with immune rheumatism, it was revealed that I have three conditions: rheumatoid arthritis, lupus erythematosus, and Sjögren’s syndrome, as stated in my hospital discharge report. Consequently, I started keeping detailed records. I jot down notes about my daily medication, any changes in my body each day, and symptoms I experience. When the eye twitching, characteristic of HFS, began, I included that in my documentation as well.”
Owing to her diligent record-keeping, she has been able to track her HFS symptoms accurately. This practice aids her in seeking consistent treatment for HFS at the hospital she regularly visits.
4.1.2. The Role of the Medical Unit
Key actors in the medical unit, who significantly influence patients’ pathways in seeking medical information and making treatment decisions, include specialists (neurosurgeons, neurologists, and ophthalmologists), non-specialized doctors (general practitioners and traditional Chinese medicine doctors), and unlicensed medical practitioners. We identified three roles they enacted in providing health information based on patients’ conditions: Accurate Information Provider, Information-Scant Provider, and Misleading Information Provider.
The Medical Unit–Accurate Information Provider.Neurosurgeons enacted the role of Accurate Information Providers, equipped with proper and formal medical training and extensive knowledge of HFS. They specialize in MVD surgery, aimed at providing a complete cure for HFS. When patients consult them, they can offer precise information about HFS and inform the fact that MVD surgery is the only radical cure available. Patients under their care receive an adequate amount of information about HFS and can access treatment or recommended resources directly from them. These neurosurgeons are generally responsible for diagnosing HFS, conducting ward inspections during hospitalization, communicating pre-operative risks, performing the surgery, and conducting follow-up visits as necessary.
The Medical Unit–Information-Scant Provider.Ophthalmologists, neurologists, and most general practitioners and traditional Chinese medicine doctors are often the role of information-scant provider in our network. This is because they typically cannot provide patients with comprehensive information about HFS. Some of them may only offer limited messages or treatment options for HFS patients following checkup and inspection, leading us to categorize them under the role of information-scant provider.
Many HFS patients initially find themselves confused about the disorder, struggling to identify the correct clinical department for their specific health issues without proper guidance. This confusion can lead them to inappropriate departments, such as Ophthalmology, under the mistaken belief that eyelid spasms are primarily an eye-related problem. However, ophthalmologists, not being specialists in HFS, can only provide limited and often unhelpful information post-examination and diagnosis, as HFS is not an eye disorder. For example, P6 initially believed his eyelid spasms were eye-related, leading him to consult ophthalmologists repeatedly. It was only after learning about HFS from a friend that he realized the issue was not directly related to his eyes. Similarly, P5 and P11, who experienced impaired vision, sought help from ophthalmologists. Yet, these specialists could not clarify their confusion, leaving them without a clear understanding of their condition despite confirming that their eyes were in good condition.
D3 emphasized that unless a specialist is involved, there is a possibility that other doctors might not recognize the disorder. Although neurologists are educated about HFS, they generally recommend medication and Botox treatments, which are not fully curative and lack long-term efficacy. They often advise patients to opt for conservative treatments, and as a result, patients may not receive the comprehensive information they seek from neurologists. As for non-specialized doctors, such as general practitioners and traditional Chinese medicine practitioners, they are usually the first medical providers HFS patients consult when unaware of their condition. However, they often can only suggest limited treatment options, like medication, Chinese herbal remedies, acupuncture, and moxibustion. These treatments are not considered effective cures for HFS, and the lack of information about the more definitive MVD surgery can lead patients to have a constrained mindset when making treatment decisions.
The Medical Unit–Misleading Information Provider.Although some non-specialized doctors are capable of identifying and diagnosing HFS, it is not a commonly encountered chronic condition for them. As a result, some may lack the necessary knowledge to recognize and accurately diagnose HFS. There is also a high risk of misdiagnosing HFS as facial paralysis, leading to the provision of ineffective treatment options unrelated to HFS cure, thereby misguiding patients with incorrect directions and misinformation. Consequently, we have observed them adopting the role of misleading information provider.
Although consulting doctors is the most direct method for seeking medical advice, some patients encounter obstacles in accessing appropriate medical services. For HFS patients in rural areas, unlicensed medical practitioners often become an alternative option. These practitioners, without proper medical licensing, typically rely on empirical or practical experiences, claiming their knowledge is inherited from ancestral masters. Their treatments usually include methods like massage and acupuncture. It is important to note that these rural doctors may lack the necessary expertise in conditions like HFS. P4, residing in a rural area, explained: ”Rural doctors often treat it [HFS] as facial paralysis because it’s more common in our area. They are not familiar with hemifacial spasm”. D3 elaborated that the most significant challenge for rural patients is their limited access to health information about their condition:
”The biggest challenge they [rural patients] face, in my opinion, is that they may not know what the illness is when they first get it, and some people don’t even realize that this [surgery] is the way to cure it until more than ten years after getting the disorder. I think the inability to access information and get timely information is one of the biggest challenges.”
There are cases of patients turning to barefoot doctors444Barefoot doctors were unlicensed healthcare practitioners who received basic medical training and worked in rural villages in China. for treatment. These practitioners commonly misdiagnose HFS as facial paralysis, a more frequent condition in rural areas. For example, P1 consulted several unlicensed healthcare practitioners, including barefoot doctors, who all incorrectly diagnosed her condition as facial paralysis. Despite undergoing their treatments for some time, her condition showed no improvement. She pursued numerous such treatments, driven by a sense of optimism and willingness to spend money on the chance of finding a cure. She described these practitioners as follows: ”He [the unlicensed healthcare practitioner] is Taiwanese, possibly a descendant of some master. In his establishment, there are group photos and other items displayed prominently at the front, showcasing his authority. There are many pictures of him supposedly curing hunchbacks, and he has received numerous banners for these alleged successes.”
4.1.3. The Role of the Community Unit
Online health information is often directly accessible to patients, whereas offline health information typically requires connections within social networks, whether acquired accidentally or intentionally. We categorize these as the community unit in real life. Consequently, many patients who access health information through offline sources outside the medical unit engage with two types of actors: those from the patients’ Core Social Circle and those from the Peripheral Social Circle (Luo and Yeh, 2012).
The Community Unit–Core Social Circle.The core social circle consists of individuals with whom patients have direct contact, including relatives, friends, colleagues, and neighbors. The core social circle plays a crucial role in assisting patients in obtaining health information. Members of this circle are often aware of the patients’ situations and may contribute more actively to the patients’ health conditions. Within the core social circle, we identified two key roles: the First-hand Informant, who provides patients with relevant and critical information about HFS, aiding their access to top-tier medical resources, and the Second-hand informant, transferring essential messages and information from others to HFS patients.
The Community Unit–Peripheral Social Circle.Beyond the core social circle, the peripheral social circle is also a significant source of health information. While this circle may not be the primary source of information for patients, and the connections within it are typically weaker than those in the core social circle, there are instances where patients have encountered or indirectly obtained valuable health information from individuals in this peripheral network. This includes friends of friends, family members of colleagues, and fellow patients met by chance in real life. The roles within this circle are the Intermediary, who provides significant information indirectly, and the Passerby, who may not offer particularly useful information, such as fellow patients met in random places.
P4 emphasized the trustworthiness of health information obtained from friends, underscoring the importance of personal connections in the health information-seeking process. P7 shared her experience, highlighting her confidence in health information received from the first-hand informant. She recounted a story about her relatives, which led to her mistrust of local hospitals:
”I don’t trust other hospitals around here because of what happened to one of my relatives. He had a minor surgery in a city hospital. It was supposed to be a simple procedure, but the surgery failed. The hospital admitted the failure, but initially said it was just a minor surgery and he would be discharged in two or three days. They even mentioned that the surgery was optional. After that incident, I opted for a big hospital in Beijing. Everyone advised against going to small hospitals for this kind of procedure.”
On the other hand, P5 acknowledged the influence of colleagues on her treatment choices, despite having reservations: ”When it comes to traditional Chinese medicine, I can’t even swallow a single drop. But some of my colleagues are strong proponents of it, so I’ve tried it before, influenced by their belief”. These colleagues, acting as the first-hand informants, provided health information that influenced her decisions. P9 discussed how his relative’s experience with HFS, who had taken medication without effective results, affected his own approach to treatment, ultimately leading him to forgo drug therapy.
In a different context, P1 detailed how well-informed her friends were about her illness: ”Exactly, they notice when something is wrong because we often meet, and they’re all aware of my condition. They know how long I’ve been dealing with this illness.” In one instance, a friend sought out and discovered a similar case in the husband of another friend, providing P1 with invaluable information. Here, P1’s friend assumed the role of an Second-hand informant, helping P1 to acquire critical health information, while the husband of her friend’s acquaintance acted as an intermediary, offering crucial insights albeit indirectly.
This circ*mstance more generally happens in rural patients, as they lack of direct connection with quality medical resources, so they tend to be more rely on word-of-mouth channels, often hearing about similar experiences from others neighborhoods or passing from their social connections. D2 noting that information tends to spread quickly among rural communities: ”When rural patients from smaller communities return with information, it tends to spread within about ten days. Once they return to their local area, word spreads, and those who have similar conditions come forward”.
P1 shared an encounter with a passerby while waiting at a bus stop. They had a brief conversation during which the lady revealed that she was convinced that all treatments, including surgery, were ineffective for HFS:
”Once, I met a nearly 70-year-old lady at the bus stop. I could tell at a glance that she had the same condition as me. I asked her, ’Auntie, do you have hemifacial spasm?’. She expressed surprise and inquired how I knew. I explained that it was because I have the same condition; I wouldn’t have asked otherwise, as it might have seemed impolite to ask her out of the blue. She confirmed that she did, and I asked if she had tried any treatments. She said it was incurable. I mentioned that surgery could help, but she believed it wouldn’t work. At that time, she was of this opinion, and being elderly, I didn’t try to persuade her further, especially since I hadn’t undergone surgery myself. If I met her now, I might tell her that surgery could treat it because back then, I was also confused about it.”
4.1.4. The Role of the Technology
Technology forms our fourth category of actor, serving as an approach for patients to access effective health information online and to locate their ultimate medical resources. This category includes devices that facilitate information distribution and transfer (e.g., mobile phones and televisions), as well as the software and online services these devices encompass (e.g., social media, search engines, digital content featuring videos, pictures, or text). While these technologies are commonplace for many people, it is important to note that the demographic of HFS patients spans from middle-aged to older adults, and not all of them are adept at using smartphones for information-seeking. Consequently, we characterize these technologies as playing two distinct roles based on how patients acquire information: either as an Active Information Channel or a Passive Information Channel.
The Technological Unit–Active Information Channel.The Internet has become an essential tool for patients seeking health information, offering both convenience and efficiency. Prior research indicates that patients prefer to seek and share health information online using search engines and social media (Rice, 2006; Fox etal., 2011; Fox and Duggan, 2013). These platforms are considered active channels where patients can proactively find health information. Search engines and social media are the primary channels highlighted in our study. Patients can input keywords into a search engine, yielding a large amount of available information. In China, Baidu is the predominant search engine, while P9 is the exception one claimed that he had only searched on WeChat as it was his most frequently used apps. These platforms serve various purposes, particularly during the awareness of illness stage for self-diagnosis and understanding the causes of their conditions, and later during the treatment decision-making stage to explore potential treatments and collect information about surgeries, healthcare professionals, and hospitals.
Social media platforms, like Tieba and Xiaohongshu, offer forums for individuals with similar health conditions to connect and share experiences. P10, for instance, sought detailed information about surgical procedures on Xiaohongshu. Videos, especially on platforms like Douyin, provide animated demonstrations that help patients understand surgical procedures. However, online information often lacks uniqueness and personalization, leading most patients to combine offline learning with online information to make informed decisions. However, this typically requires some prior knowledge before actively engaging in online searches.
The Technological Unit–Passive Information Channel.We categorize digital content that users encountered by chance or system recommendation as a passive information channel. This often includes content that is not actively sought out but may contain misleading information. For example, P4 came across a video on Douyin recommending a hospital in Shandong for HFS surgery. However, he later consulted with his relatives in Shandong, then he discovered which might be unreliable and even a fraud, as his relatives had never heard about the hospital before. Additionally, some patients have gained awareness of their condition through health programs on television. For instance, D2 mentioned that patients have discovered nationally renowned experts like Dr. Liu through his appearances on CCTV (China Central Television) health programs in 2003-2004. However, this method of information acquisition has become less common in recent years.
4.2. Top-Tier Medical Resource Network Strategies
From the analysis of the connections and interactions among actors in our health information-seeking network, we observed five distinct health information-seeking strategies that ultimately facilitate access to top-tier medical resources. These strategies are named (see Table 2) based on the concepts illustrated in ANT. They include the Collaborative Inquiry Strategy, the Intermediary Strategy, the Self-Directed Inquiry Strategy, the Observational Strategy, and the Utilization of Non-Human Strategy.
4.2.1. Network: Collaborative Inquiry Strategy
The collaborative inquiry strategy involves the familial unit directly networking with top-tier medical resources. This approach allows for direct and effective access to these resources. Typically, this strategy involves either the first-hand informant from the community unit or the medical unit. Participants can obtain necessary information and establish direct connections with doctors through online channels (e.g., video calls, audio calls, text messages) and offline meetings. This strategy facilitates fast and accurate information exchange, enabling immediate response, making it a rapid and reliable method.
In the familial unit, there may be direct connections with individuals who have recovered from HFS. These individuals, often in good post-operative recovery, provide trustworthy first-hand information. For instance, P12, a 50-year-old proactive information-seeking patient with four years of HFS experience and currently considering MVD surgery, gained insights from a friend who underwent successful surgery. This friend also introduced medical resources to P6, P12’s colleague, who similarly had a successful surgery. P12 believes that resources recommended by familiar, recovered individuals are reliable and has been closely monitoring P6’s post-operative recovery, which he finds highly informative.
Additionally, the familial unit may have direct connections with medical professionals. Patients themselves or their family members might be doctors, or they may have doctors within their core social circle. For example, P3 is a 70-year-old patient living in Beijing (i.e. first-tier city) with her daughter, benefits from this network. Her daughter, a doctor in a top-tier hospital and acting as a direct agent, leverages her professional network to access medical resources for P3.
4.2.2. Network: Intermediary Strategy
The intermediary strategy comes into play when direct, effective networking isn’t available. In such cases, the familial unit relies on inquiring within their social network, where information and resources often arrive indirectly through intermediaries. This information typically spreads via word-of-mouth and daily conversations, involving the second-hand informant and intermediary within the community unit. Patients mostly gather information from experienced and recovered patients, introduced by their core social circle.
This indirect approach can be time-consuming, especially since HFS is relatively uncommon in the general population. It is often a lengthy process before patients encounter accurate resources about their condition. This delay is more pronounced for patients in rural areas. D2 highlights the struggles stemming from this delay:”Without proper dissemination of health information, patients might remain oblivious to their condition. Some have suffered for over ten, even twenty years, before seeking appropriate help. This prolonged ignorance can be quite distressing. Many resort to temporary solutions like Botox injections to alleviate symptoms, often repeatedly”.
Both P1 and P7 discovered top-tier medical resources through conversations within their social network. P1 recounts a friend’s awareness of her HFS and their subsequent inquiry about medical resources:
”It was quite a coincidence that a friend of mine brought it up casually, as many of my friends know about my condition, and they often ask me how it’s going. She had just met one of her friends a few days ago, whose husband had undergone the surgery. So, she called me, asking about my condition, and I said it was still the same. Then she mentioned that the husband of her friend who had the surgery about eight years ago, and he has recovered very well, with no recurrence of the disease at all.”
Similarly, P7 learned about medical resources at a class reunion. There, she met a classmate whose brother is a doctor. She shared a video of her facial symptoms with him for a diagnosis and received contact information for the needed medical resources afterwards.
4.2.3. Network: Self-Directed Inquiry Strategy
The self-directed inquiry strategy predominantly involves experienced patients and the medical unit. Patients with a history of illnesses tend to be more attentive to their health conditions. Due to their proximity to healthcare providers, they often have regular follow-up visits or maintain contact with doctors who have previously treated them successfully. This access allows them to directly reach out to authoritative and trustworthy doctors for personalized and professional medical advice.
P11, who has been diagnosed with several chronic immune system-related conditions, has extensive experience consulting various doctors and is familiar with the authority of different hospitals. She regularly has follow-up visits with specialists. When she noticed her HFS symptoms, which were different from her usual conditions, she knew exactly which trusted doctors to approach for medical advice. One of these doctors directly connected her with the appropriate medical resources. She explains her choice:
”I chose this hospital for my immune disease. I’ve always opted for this hospital, and it was this doctor who understood my condition. Moreover, it was this doctor who referred me to another doctor, Dr. Liu. I had my child look him up on Baidu, and, well, this person – it turns out he is quite renowned nationwide for performing this type of surgery, with a high success rate. That’s why I trust him and have chosen to undergo the surgery at this hospital.”
4.2.4. Network: Utilization of Non-Human Strategy
Using search engines, browsing social media, and engaging in online communities are common information-seeking methods today. These approaches are convenient, but they often present a challenge in discerning the accuracy of the information, given the vast amount available. As a result, the problem of misinformation persists. Even with access to professional knowledge, it can be difficult for patients to comprehend such material, and effective information online can be limited. Moreover, searching for conditions like HFS, which are not common chronic conditions, can be time-consuming and may require some prerequisite knowledge. Hence, most patients use this strategy to enhance and confirm their understanding of the health information. This strategy encompasses the active information channel within the technology.
P6 discovered his disorder through a colleague who had experienced the same issue but had recovered following MVD surgery. He acquired medical information from this colleague and then verified it online to understand the disorder and treatment options in more detail. This additional research helped him decide to undergo the surgery.
4.2.5. Network: Observational Strategy
The Observational Strategy involves the familial unit receiving information passively or accidentally, often through visual media such as television and social media platforms. This strategy includes the passive information channel within the technology unit. While encountering this type of information requires minimal effort, it also depends on chance, and there is a risk of encountering misinformation and disinformation. For instance, P4 stumbled upon a video recommending a hospital for HFS surgery, only to discover later that the hospital was not formal and possibly one of the Putian Hospitals555Putian Hospitals are a group of private hospitals in China, notorious for their aggressive marketing, over-reliance on high-profit medical services, and unethical medical practices..
P5, a 54-year-old patient who has been living with HFS for 11 years, has a very close relationship and strong connection with her elder cousin sister. Whenever P5 feels unwell, she turns to her sister, who provides not only emotional support but also practical help, such as assisting in obtaining medications. Her sister, a keen follower of health-related TV programs, diligently takes notes while watching: ”My parents passed away quite early, and it was my sister who took care of me. She loves watching programs on CCTV (China Central Television), and she’s very attentive. After watching, she remembers cases, especially common ones like gynecological issues. She takes notes on what medicines to take and what remedies to try. So, whenever I feel unwell, I just give her a call”. On one occasion, her sister urged P5 to watch a particular program that was discussing symptoms remarkably similar to those P5 was experiencing. It was this program that led P5 to realize that she had been exhibiting symptoms of HFS
Strategy Typical units and actors involved Advantages Challenges Characteristics Collaborative inquiry strategy 1. Familial unit
2. Community unit: first-hand informant
3. Medical unit1. Direct networking
2. Fast and reliable1. Effective networking required Utilization of online and offline meetings for information exchange, enabling immediate responses. Intermediary strategy 1. Familial unit
2. Community unit: second-hand informant and intermediary1. Experienced networking (e.g. recovered patients)
2. No prerequisite1. Indirect sources
2. Time-consumingReliance on social networks, where information and resources arrive through intermediaries, typically spreads via word-of-mouth and daily conversations. Self-directed inquiry strategy 1. Experienced patient
2. Medical unit1. Professional networking
2. Tailored medical advice1. Medical history with doctor consultations Patients can self-refer based on previous medical experiences and directly contact with doctors. Utilization of non-human strategy 1. Familial unit
2. Technology: active information channel1. Online networking
2. Convenient access to information1. Misinformation
2. Time-consuming
3. Overwhelming similar and limited information
4. Prerequisite knowledge requiredUsing search engines, browsing social media, and engaging in online communities, often used to enhance and confirm understanding of health information. Observational strategy 1. Familial unit
2. Technology: passive information channel1. Unrelated networking
2. Effortless1. Misinformation
2. SerendipitousInvolves receiving information passively or accidentally, often through visual media.
5. Discussion
In the findings section, we described the health information-seeking network and journey of HFS patients, illustrating the interactions between HFS patients and their stakeholders. Additionally, we highlighted the top-tier medical resource seeking strategies, analyzing their pros and cons, and the involved actors in each strategy to demonstrate their workflows. In this section, we shift our focus to themes related to the similar and distinct patterns in the health information-seeking journey between HFS and other common chronic conditions. We examine how strategies are effectively utilized within the network during the medical resource-seeking process and their features. Finally, we outline design opportunities for technologies that may assist HFS patients in their information-seeking journey and overcome the challenges in the utilization of their strategies.
5.1. The Adventurous Journey of HFS Patients
HFS, not being a common chronic condition, signifies that its patients are part of a non-dominant group in society, underscoring the importance of amplifying marginalized voices to highlight their challenges and needs. However, most research on HFS predominantly concentrates on its clinical, medical, and neurosurgical aspects, such as diagnosis, socially embarrassing symptoms, treatments, and etiology, often employing observational methods (Aktan and Depierreux, 2023; Tan etal., 2005; Chaudhry etal., 2015; Rosenstengel etal., 2012; Abbruzzese etal., 2011). While undoubtedly beneficial, this approach does not directly represent the perspective of HFS patients. Furthermore, research in HCI and CSCW has extensively focused on common chronic conditions, exploring these patients’ needs, including their desire for control and how technology design can support them in managing their goals and living with chronic conditions (James etal., 2023; Pang etal., 2013). Notably, chronic condition management is a significant focus within the HCI and CSCW community (Nunes etal., 2015). However, we observed that HFS, as a condition that gradually worsens, does not require the same level of management. Therefore, it is crucial to also emphasize the voices of non-dominant patient groups, like those with HFS, particularly as it is a chronic condition with a low incidence rate yet is well-known to specific experts, such as neurosurgeons. These disorders have often been under-researched and poorly understood. Our research is pioneering in its focus on the perspective of HFS patients, employing a qualitative approach to listen to and gather insights about their condition and determine whether their journey differs from or resembles that of others
Our findings elucidate the positions of HFS patients and their stakeholders within the health information-seeking network, detailing their roles and interconnections. We discovered that health information sources for HFS patients can be broadly categorized into the familial unit, the medical unit, the community unit, and the technology. Each category offers distinct types of information, which can be effective, ineffective, or even misleading. These units are connected in the health information-seeking workflow, ideally guiding HFS patients toward their final goals, although there are instances where inaccurate information may mislead them. This framework aligns with Wilcox etal. (2023)’s findings on the infrastructural forms of transgender and non-binary peoples’ care, assembled by informal social ecologies, formalized knowledge sources, and self-reflective media, reflecting similarities with our identified units in a similarly marginalized population.
Our analysis of interview data suggests that the familial unit should encompass both patients and their family members, functioning as a cohesive entity. Patients who actively seek information, termed proactive information-seeking patients, often engage with family members acting in a companion role. Conversely, patients with low technological literacy, typically older individuals or those residing in rural areas with limited medical resources, depend on family members to act as direct agents in medical resource finding. Song etal. (2019) observed that older adults in rural China, often living with their children and lacking medical resources, rely on proxy health information seeking due to educational and technological limitations. Our findings also reveal that HFS patients face challenges in retrieving useful and effective online information due to the rarity and repetitive nature of available information, leading to frustration. This phenomenon parallels the experiences of individuals with rare diseases, as described by MacLeod etal. (2017), who perceive a neglect of their support needs in online and professional medical advice.
Additionally, Cutilli (2010) identified various information sources, including TV, radio, newspapers, magazines, the Internet, and personal networks, used to supplement healthcare professional advice. In our study of HFS, we expand upon these findings, demonstrating that HFS patients also turn to online sources for confirmation and validation, with these sources and social networks often serving as direct approach for health information and medical advice. Employing ANT, we further illustrate the dynamic interplay among these sources, highlighting how HFS patients employ diverse strategies to achieve their ultimate health-related goals.
5.2. Strategies Overcoming Asymmetries in Healthcare for HFS Patients
We discovered that the strategies HFS participants used to access top-tier medical resources can essentially be divided into five categories. Although no single strategy guarantees successful access to these resources, our findings offer a broader perspective on how patients with uncommon disorders navigate their search, especially for top-tier medical services. We noted that HFS participants’ choice of top-tier medical services is influenced not solely by available opportunities. It is often a sense of security and trust for them, as the authoritative nature of these services and the presence of fellow patients provide a reassurance feeling.
The health information-seeking network is dynamic and bidirectional, allowing HFS participants to adapt their strategies based on their specific circ*mstances to find the most effective approach. Many participants simultaneously employ two to three strategies, eventually achieving success with one. While the strategies we identified are not confined to particular actors, we noted consistent and typical patterns in the interactions between actors within each strategy. These interactions form subnetworks within the broader health information-seeking network, with distinct flows of information in each strategic network. Similarly, Burgess etal. (2022) described family, friends, peers managing depression, coworkers, medical professionals, and even strangers serve as collaborative partners in mental health self-management. Individuals may learn effective methods for their own management from these collaborators. Huh and Ackerman (2012) observed that patients with chronic conditions collaboratively engage with fellow patients to manage their condition and develop individualized strategies. This collaboration not only enriches their information base but also helps compensate for limited medical resources.
Beyond the observational strategy, the other four strategies employed by HFS participants are not purely based on luck; they involve proactive seeking and validation of information sources, leading to more confident outcomes. The collaborative inquiry strategy requires effective networking to directly access medical resources, posing a higher demand for individuals in rural areas or with low socioeconomic status. Haggerty etal. (2014) highlights the rural-urban disparities in healthcare-seeking behaviors. Rural patients often rely on their friends and family members, whereas urban patients tend to depend more on the internet and health professionals due to differences in location and medical resource availability. The self-directed inquiry strategy requires a history of illness, enabling patients to build trust with doctors and access more accurate and personalized medical resources. We found that the intermediary strategy and the utilization of non-human actors are two approaches that can effectively bridge gaps and asymmetries in the doctor-patient relationship without stringent requirements, particularly benefiting rural patients. However, these strategies can involve misinformation and be time-consuming. Therefore, enhancing patients’ ability to utilize these strategies is crucial, and we propose design opportunities for technologies to improve HFS patients’ access to top-tier medical resources. In the following subsection, we will discuss potential tools designed to enhance their capability in strategy utilization.
5.3. Design Opportunities
Based on our findings, we identified several challenges that HFS participants encountered while using strategies for medical resource seeking. Removing these barriers would enable patients to have better and faster access to medical services, avoiding difficult obstacles in their journey. Here, we offer insights into these challenges, presenting potential opportunities for technology design to enhance patients’ access to top-tier medical resources.
5.3.1. Design towards the Familial Unit
As our HFS participants ranged in age from middle-aged to older adults and lived in both rural and urban areas, some exhibited low health literacy and technological literacy, especially older adults in rural areas. These individuals face more challenging circ*mstances and may feel more vulnerable than their urban counterparts due to differences in education levels, geographic distance, and transportation difficulties. Identity and culture also play pivotal roles in the illness experience and medical care process (Kleinman etal., 1978). Rural patients often possess distinct identities and cultural perspectives compared to urban patients. The lack of healthcare professionals in rural areas can leave these patients feeling powerless in the ’referral games’ between rural and urban providers (Brundisini etal., 2013), making online resources valuable tools for enhancing their access to necessary health information, particularly for vulnerable groups.
Propagation and Education is Crucial.Regarding design opportunities to these problems, enhancing health literacy emerges as the most significant approach. Individuals with high health literacy are more likely to make informed decisions when seeking health information online (TeixeiraLopes and Ramos, 2020). Promoting health information dissemination and educational programs is crucial, such as incorporating health topics into school curricula to educate children. For older adults, offline promotion is necessary, such as holding regular free clinic sessions in the community to engage older adults, who typically show interest in these events. Building online communities or support groups on digital platforms can further educate them. Additionally, these connections can provide social support and bridge information gaps when they encounter difficulties. Promoting online medical consultation platforms is also significant, as they offer higher transparency and convenience. Patients often feel a greater sense of control on these platforms (Zhang, 2023), which can help them overcome information and power asymmetries in the doctor-patient relationship when using online resources.
5.3.2. Design towards the Medical Unit
HFS participants are often easily misdiagnosed due to the condition’s rarity, leading them to occasionally seek treatment from unlicensed medical providers when effective cures are elusive. This situation exemplifies the Chinese adage, ”a desperate patient will seek help from any doctor”. In such scenarios, the importance of a doctor’s authority wanes, and the asymmetries in the doctor-patient relationship tend to worsen. In this context, the utilization of telemedicine, rating systems, and AI tools could provide significant assistance.
Enhancing Access to Reliable Healthcare Providers.For rural patients, the government could provide devices supporting telemedicine. When patients encounter diagnosis or treatment challenges with local doctors, they should have the option to access top-tier medical consultations remotely. This approach can deliver more accurate health information effortlessly and assist local doctors in gaining knowledge and experience with less familiar conditions, ultimately saving time and reducing costs and inconveniences for patients (Stowe and Harding, 2010). Furthermore, due to the prevalence of misinformation and advertisem*nts online, an official and trustworthy doctor ratings website could be invaluable. This website should feature comments and ratings verified by medical proof, offering the public a reliable source to assess the strengths and weaknesses of various hospitals.
In addition, integrating artificial intelligence into mobile app design can significantly enhance patient accessibility. Large language models (LLMs) can serve as a means for patients to ask medical questions. Due to asymmetries in the doctor-patient relationship, patients often hesitate to ask sufficient questions during medical consultations (Zhang, 2023). A tool incorporating LLMs with professional medical knowledge could act as an ”online doctor”, allowing patients to express specific requirements and ask questions anytime and anywhere. Also, it is feasible to develop a mobile application that not only pre-diagnoses HFS but also assesses its severity based on a standard grading system (Cohen etal., 1986), differentiating it from similar conditions like facial paralysis and Meige’s disorder. Mobile apps, especially beneficial in rural areas, offer a more rapid and convenient dissemination method compared to traditional word-of-mouth, and can also be used by rural doctors as diagnostic tools, ensuring more accurate results.
5.3.3. Design towards the Technological Unit
Access to new information significantly influences individuals’ health-related decision-making and reshapes their understanding of their conditions. Today, individuals have convenient access to a wealth of health information about illness experiences through online resources. Self-diagnosis has become a common aspect of online health information seeking, with search engines and social media being the primary tools (Chi etal., 2020; DeChoudhury etal., 2014). However, the accuracy and credibility of online information are often questionable (Zhao and Zhang, 2017), leading to misdiagnosis, underdiagnosis, and extremely negative emotions and decisions, especially concerning disorders unfamiliar to patients. Beyond the issues of misinformation and disinformation, HFS participants reported receiving only limited and repetitive information online, lacking personalized medical advice. Therefore, developing technological tools and establishing policies could be viable approaches to addressing these challenges.
Empowering Patients through Online Resources.Firstly, developing filtering mechanisms or browser plugins is crucial for sifting through and evaluating misinformation and disinformation on search engines and social media. Additionally, developers can create specialized apps specifically for health information searches, aiming to decrease the likelihood of users encountering inaccurate content. Secondly, implementing policies to combat health-related misinformation and disinformation is essential for societal well-being. By increasing the costs associated with promoting such information, its widespread prevalence could be significantly reduced. Thirdly, the government also plays a pivotal role in enhancing public health literacy, which can be achieved by promoting official health-related accounts for reliable information dissemination. With the shift towards live streaming in China, largely replacing traditional television, this medium offers a unique opportunity to invite professional practitioners to disseminate medical knowledge through official channels. Such initiatives would not only ensure the provision of accurate health information but also bolster online networking, particularly beneficial for those lacking effective offline networking opportunities.
6. Limitations
This study has several limitations. First, we encountered a low response rate during participant recruitment, resulting in a relatively small sample size for patient interviews. This limitation restricts our ability to provide a comprehensive and detailed depiction of the circ*mstances of individuals in both rural and urban areas of China. Second, conducting interviews remotely may have hindered our ability to establish rapport with patients, potentially limiting our insight into their personal experiences and issues. Third, our study exclusively explored the experiences of individuals within China. Therefore, future research should aim to expand the participant pool and investigate these issues in diverse national medical contexts for more comprehensive and comparative insights.
7. Conclusion
In this paper, we examine the health information-seeking journey and practices of individuals with hemifacial spasm, a condition common among specialized doctors but uncommon to the general public, by interviewing neurosurgeons and HFS patients in the Chinese context. We applied Actor-Network Theory to analyze our data, identifying both human and non-human entities, their roles, and interactions in the health information-seeking network, as well as the strategies and workflow in seeking top-tier medical resources. Furthermore, we propose design opportunities for technologies that address the challenges encountered by patients during their journey and in utilizing these strategies. Our objective is to contribute not only to research on patient engagement within the healthcare domain but also to enhance our understanding of the potential roles healthcare practitioners, designers, developers, and government can play in improving individuals’ health awareness. Additionally, we aim to support their ability to acquire health information through various approaches, ultimately enhancing their capacity to overcome information and power asymmetries in the doctor-patient relationship, and to gain access to better medical services and more treatment options.
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