My primary area of research focuses on how patients diagnosed with chronic conditions use the social web, such as Twitter, Facebook, online support groups, to communicate with other patients about their health. Increasingly, patients with chronic diagnoses are turning to the Internet with questions and concerns related to their diagnosis, management of their illness, and other uncertainties. Some of these patients also share health information online; this often occurs in online support groups and on social media, where patients can communicate directly with other patients. Although these activities are becoming more popular over time, we understand very little about how they may impact and interact with one another, or with what role they may play in how patients make sense of, manage, and make decisions about their illness.
My work is patient-focused and examines the motivations behind online health information behaviors and their impact on the clinical encounter, health decision-making, and self-management of chronic illness. This area of research enables me to collaborate across disciplines; I have worked with researchers in medicine, public health, data science, computer science, communications, while conducting scientific inquiries. In all of these projects, I focus on the central role that information plays in the everyday lives of patients with chronic conditions. To do so, I primarily use qualitative methods of data collection and analysis, drawing on the lived experiences of patients by developing relationships with them through interviews and longitudinal observations of their health information interactions.
I have acted as the project leader on several studies in this domain, including studies examining the link between information seeking, personal health information disclosure, and homophily in online support groups for patients diagnosed with chronic kidney disease; the impact of online health information seeking on patient/provider communication in patients diagnosed with kidney disease; the quality of health information and data safety practices in online support groups for chronic illness; a mixed-methods analysis of discussions of drug use on social media and the implications of these discussions for public health interventions; and an investigation of how patients with chronic kidney disease use social media to find altruistic kidney donors. I also have extensively collaborated both in and outside of my discipline with researchers in nursing, epidemiology, medicine, computer science, data science, and communications.