Patient care does not only take place in hospitals and clinics, but also at patient homes. While there has been an extensive body of research separately investigating the information practice of clinicians and patients, little has been done to look into how information afforded by these two parties is interweaved together to achieve better care. This research set out to answer key questions to further our knowledge on clinicians and patients’ cooperative information behavior. The research questions that we attempted to answer included: (1) How do home-based care and clinical care complement and influence each other? (2) What information offered by clinicians is crucial for guiding home-based care activities, and vice versa? and (3) At what time, and under what circumstances, is such information needed? 

To answer these questions, in the past five years, we conducted a series of empirical studies with individuals facing a variety of health conditions and at a variety of stages of disease progression. In our study with patients visiting the Emergency Department (ED), we found, surprisingly, they become more information deprived despite the fact that more information is available with the use of electronic systems. This is because patient information becomes increasingly locked within the computer. In addition, interacting with computers takes away ED providers’ time from attending to patient needs. Analysis of the data also uncovered that patients desire not only their care related information but information about how ED functions and how clinical work is carried out, in order to set right expectations about their treatments and to facilitate their communication with healthcare providers. Similar findings were also observed in our field studies conducted at outpatient clinics. 

As part of this project, we also examined how individuals manage their health at home. Through a study at a senior retirement community, we found that health management is a balanced act: seniors constantly struggle to balance external monitoring by healthcare providers, and self- management activities initiated by themselves. These different forms of care are interconnected and complimentary. However, seniors experience a fear of being reliant on external monitoring, and they strive to maintain independence through various self-tracking and self-management efforts. This study also identified different forms of conflicts when healthcare professionals’ advice did not align with the realities that individuals live in, such as constraints imposed by other health conditions, availability of resources, and personal values. Seniors in our study had to address these conflicts using a variety of strategies, including learning and constructing self-knowledge, advocating for themselves and constant prioritizing their needs. Similarly, we found stroke patients had to sustain their rehabilitation efforts through creatively appropriated everyday resources, especially when professional care was no longer available or affordable to them .

Throughout these studies, we have also learned that mobile technologies and social media platforms available today played a significant role on individuals’ everyday health management activities. Inspired by this observation, we carried out two additional studies to examine how individuals make health decisions based on information that they obtained online, especially when professional assistance was not available, or was insufficient. The first study examined how individuals responded to an ongoing public health crisis: Zika. At the time when we began this study, Zika just got reported and there was very little useful information available to the general public provided by medical authorities (e.g., medical doctors or public health agencies) regarding its cause, measures of prevention, and health consequences. To gather information for risk assessment and personal decision making (e.g., travel planning), many people turned to social media. Our analysis identified the types of information that the public needed when dealing with uncertainties of the Zika outbreak; and how people made decisions using partial and incomplete information largely created and disseminated by their peers. In another study, we looked at how individuals collect, interpret, and act upon patient-generated health data. We found that women with fertility challenges have to turn to online forums to seek help from their peers to collaboratively interpret the data, due to the lack of professional guidance for their self-tracking practice. 

Collectively, these studies identified the types of absent medical knowledge that is essential for individuals to manage their own health; uncovered discrepancies when advice from medical professionals was insufficient or impractical to follow; and offered insights into designing health technologies that are capable of integrating both clinical and patient sides of information and concerns. We hope to continue the exploration of these critical research topics. The ultimate objective is to design health technologies that can provide right information at the right time and in the right format for informed health decision making. 

Last Modified: 01/15/2019
Modified by: Yunan Chen