Yunan Chen

Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis

Consumer health technologies have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how individuals use self-tracking technologies to manage them. This in-depth interview study explores self-tracking practices in multiple sclerosis (MS), a complex neurological disease that causes physical, cognitive, and psychological symptoms. Our findings illustrate that when faced the unpredictable and degenerative nature of MS, individuals regained a sense of control by intertwining self-care practices with different self-tracking technologies. They engaged in disease monitoring, fitness tracking, and life journaling to quantify the body and care for the mind. We focus attention on the role of emotional wellbeing and the experience of control in self-tracking and managing MS. Finally, we discuss in which ways self-tracking technologies could support the experiential nature of control and foster mindful experiences rather than focusing only on tracking primary disease indicators.

Interactive systems for patient-centered care to enhance patient engagement

In today’s society, most people are both consumers of information technology and of health care. Virtually every person has consumed health care and will consume more as one ages. Moreover, 84% of US households own a computer,1 and 64% of adults own a smartphone.2 We carry pocket-sized devices that connect us to people around the world and vast stores of information. With these technologies, we manage our lives from mundane activities like reading, checking the weather, making to-do lists, and buying books and clothes, to more complex tasks such as learning, managing finances, shopping for houses, and maintaining ties with friends and family around the world. With such diverse and powerful technologies at our fingertips and myriad societal-level health care challenges in cost, quality, and outcome, it is tantalizing to imagine all of the ways that health information technologies (health IT) can be used to enhance people’s health and societies’ health care delivery. Patient-centered care respects and responds to individual differences in patient preferences, needs, and values.3 To respond to such differences and achieve patient-centered care, patients and health care professionals must engage in constant communication. In recent years, researchers have examined a number of ostensibly patient-oriented technologies that could enhance such communication, including patient portals, personal health records (PHRs), and mobile health (mHealth) applications. Furthermore, it is not difficult to conceptualize pathways through which such information systems might improve communication between patients and clinicians, create more patient-centered care, and help achieve the triple aim of better experiences of care, better population health, and lower health care costs.3 Yet, practically, these enticing tools and outcomes are far from reality. There is scant evidence that patients frequently or effectively access and use information systems that engage them and improve patient-centered care delivery. For example, patients generally have …

Is my doctor listening to me?: impact of health it systems on patient-provider interaction

With the rapid development of information systems in healthcare practices, the traditional within-clinic, face-to-face mode of patient-provider interactions are increasingly facilitated, enriched, and mediated by new types of health technologies. These technologies are designed to bring better access to patient care information, resources, and a variety of communication channels. Yet, the use of these technologies may introduce unintended impacts on both patients and health providers. In this panel, drawing from our recent studies on patient-provider interaction, the panelists will discuss the emerging issues in this field. Specifically, we discuss the impacts of new technologies on synchronous co-located interaction and asynchronous remote interaction, as well as the shifts in patient-provider interaction that will emerge as ubiquitous health technologies becomes more prevalent.

Designing online games for real-life relationships: examining QQ farm in intergenerational play

Intergenerational players are online game players of different generations within an extended family. We investigated intergenerational play between older parents and their adult children in the popular Chinese social networking game QQ Farm. We identified game features that encourage intergenerational play. To do this, we conducted online observations and semi-structured interviews with nine pairs of Chinese parents and their adult children. The results of this study suggest that an online game for intergenerational play needs to consider a range of factors, including social and occupational responsibilities, gaming interests, and gaming expertise among extended family members. The data suggests that intergenerational online games may generally benefit from the following features: (1) low entry barrier, (2) appealing game theme, (3) online interactions that extend real-life relationships, (4) low time commitment, and (5) asynchronous play. We have also found features which may have unique appeal to Chinese intergenerational gamers.

Managing Uncertainty: Using Social Media for Risk Assessment during a Public Health Crisis

Recently, diseases like H1N1 influenza, Ebola, and Zika virus have created severe crises, requiring public resources and personal behavior adaptation. Crisis Informatics literature examines interconnections of people, organizations, and IT during crisis events. However, how people use technology to cope with disease crises (outbreaks, epidemics, and pandemics) remains understudied. We investigate how individuals used social media in response to the outbreak of Zika, focusing on travel-related decisions. We found that extreme uncertainty and ambiguity characterized the Zika virus crisis. To cope, people turned to social media for information gathering and social learning geared towards personal risk assessment and modifying decisions when dealing with partial and conflicting information about Zika. In particular, individuals sought local information and used socially informed logical reasoning to deduce the risk at a specific locale. We conclude with implications for designing information systems to support individual risk assessment and decision-making when faced with uncertainty and ambiguity during public health crises.

Turning to Peers: Integrating Understanding of the Self, the Condition, and Others' Experiences in Making Sense of Complex Chronic Conditions

People are increasingly involved in the self-management of their own health, including chronic conditions. With technology advances, the choice of self-management practices, tools, and technologies has never been greater. The studies reported here investigated the information seeking practices of two different chronic health populations in their quest to manage their health conditions. Migraine and diabetes patients and clinicians in the UK and the US were interviewed about their information needs and practices, and representative online communities were explored to inform a qualitative study. We found that people with either chronic condition require personally relevant information and use a broad and varied set of practices and tools to make sense of their specific symptoms, triggers, and treatments. Participants sought out different types of information from varied sources about themselves, their medical condition, and their peers’ experiences of the same chronic condition. People with diabetes and migraine expended great effort to validate their personal experiences of their condition and determine whether these experiences were ‘normal’. Based on these findings, we discuss the need for future personal health technologies that support people in engaging in meaningful and personalised data collection, information seeking, and information sharing with peers in flexible ways that enable them to better understand their own condition.

Non-clinical work counts: facilitating patient outflow in an emergency department

We conducted an observational study in an emergency department (ED) to acquire an in-depth understanding of the activities and processes involved in the ED patient outflow and the challenges encountered in the outflow coordination with heterogeneous and autonomous stakeholders within and across organisations. We identified that inefficient patient outflow not only led to overcrowding in the ED because patients could not be admitted to the ED, but it also affected the operation of other inpatient units and that of external organisations. Moreover, the overcrowding issue was found to be contingent on how efficiently the multiple, concurrent, and intertwined patient outflow work was coordinated. The patient outflow coordination work was primarily non-clinical, and invisible in the current information system. Therefore, we propose to make the non-clinical coordination outflow work visible and be supported in the information system as efficient outflow is crucial to the efficiency of the overall patient flow.

The invisible work of health providers

This forum is dedicated to personal health in all its many facets: decision-making, goal setting, celebration, discovery, reflection, and coordination, among others. We look at innovations in interactive technologies and how they help address current critical healthcare challenges. ---Gillian R. Hayes, Editor

Restructuring Human Infrastructure: The Impact of EHR Deployment in a Volunteer-Dependent Clinic

Non-profit organizations (NPOs) are often resource-restricted and rely on volunteers to function. As such, their human infrastructure - the social system supporting work - is different from conventional organizations, and technologies that function in a traditional organization with a stable workforce may not work in NPOs. Through an investigation of the deployment of an Electronic Health Record (EHR) system in a safety-net free clinic serving underprivileged populations, we report how the EHR disrupted the human infrastructure - namely, the work typically enacted by volunteers. Specifically, there was a mismatch between the technological and human infrastructures leading to diminished volunteer roles, an increased workload for paid employees, and a negative impact on the quality of patient care. In turn, employees acted to reconcile the disrupted human infrastructure by creating new work roles for volunteers, re-establishing the quality of patient care, and developing workarounds for volunteers to resume their volunteer work. Finally we discuss how the commercial EHR system failed to support the fluid volunteer-based human infrastructure of the free clinic.

Design for Supporting Healthcare Teams

In this chapter, we highlight the key characteristics of collaborative teams in healthcare and identify a variety of healthcare teams that differ by varying degrees of shared objectives, clarity of role specifications, and interdependencies. We then review sociotechnical design requirements for teamwork in healthcare settings, ending with two case studies that employed these concepts to demonstrate the dynamic and complex team collaboration in healthcare. We take the perspective that healthcare is a team sport. Effective collaboration of interdisciplinary teams has enabled stunning achievements in patient care, while breakdowns in communication and coordination all too often lead to adverse events. To support health professional teams, health information technologies (HIT) such as electronic health record (EHR) systems and mobile devices should be designed for effective communication and collaboration. Although much attention in health informatics has been focused on supporting the cognitive activities of individuals, improvements in safety and quality of care will depend on technologies that support teamwork and that account for the sociotechnical systems in which healthcare teams function. Understanding the sociotechnical design requirements and how teams work in healthcare settings can thus improve the design, implementation, and impact of health IT.