Title: Encouraging Patient Voice, Participation and Engagement in Health and Information Behaviors Research
Speaker: Annie Chen
Time: Tuesday, May 1, 1:15-2:30PM
Location: UTA 5.522 (1616 Guadalupe St., 5th Floor)
Patients and other health consumers experience many challenges in the management of their own health, particularly in the face of chronic conditions. In the process of addressing these conditions, they experience both a myriad of encounters with health information. In this talk, I share different methods that I have used to include patient voice and encourage patient participation in research, particularly with patients who experience chronic pain-related conditions. In particular, I present two examples. First, I will describe a study called the Body Listening Project, an innovative effort to leverage collective wisdom in the health domain. This project involved a website where people could contribute their experiences of and dialogue with others concerning body listening and self-management. This talk will describe two sets of findings from the project, one involving text mining and visualization techniques to compare the nature of the information produced during the study, and the other, a qualitative analysis to develop a coherent understanding of the process of body listening. In content analysis of the tags contributed, we developed a preliminary classification scheme, the Body Listening and Self-Management Taxonomy, and compared the concepts in this taxonomy with concepts from an extant health knowledge resource, the Unified Medical Language System (UMLS), that were automatically extracted from the data. We also employed visualization techniques, including network analysis, to investigate structural relationships among the categories in the taxonomy. Use of these visualizations can be helpful in practice settings, to help library and information science practitioners understand and resolve potential challenges in classification; in research, to characterize the structure of the conceptual space of health management; and in the development of consumer-centric health information retrieval systems. In my second example, I will show how visual elicitation techniques were used to encourage patient participation and voice in an interview study of fibromyalgia patients’ illness journeys. The two techniques were timeline drawing and collaborative viewing of an interactive timeline visualization comprised of participants’ digital traces – social media that they had authored over time. Used complementarily, the techniques facilitated a richer characterization of people’s information interactions and health behaviors. I will conclude with reflections on the methods, as well as opportunities for collaboration.
Dr. Annie T. Chen is an Assistant Professor in the Department of Biomedical Informatics and Medical Education at the University of Washington School of Medicine. Her research interests include chronic illness information behaviors, health-related social media use, and research methods. She is particularly interested in long-term health knowledge acquisition and formation, leveraging patient expertise to augment knowledge resources, and the ways in which interface and visualization design can shape people’s interpretations of information. She is also currently involved in crowdsourcing initiatives in multiple domains, including chronic disease self-management, genetics, and the digital humanities. At the University of Washington School of Medicine, she teaches graduate-level courses in consumer health informatics, biomedical informatics, and human-centered design; and mentors students in research on health information behavior, health information quality, and social media text mining and visualization.
1:15pm to 2:30pm