The social side of personal engagement in healthcare

Abstract

The recent trend toward patient participation in their own healthcare has opened up numerous challenges and opportunities for research related to collaborative systems. In this paper, I summarize interdisciplinary efforts to create "shared understandings of personal health"-in which collaborative systems are designed through ongoing efforts to assess and support patients' information and communication needs. In particular, these efforts address needs as they are made evident in healthcare settings, such as the need to stay informed about care processes, track and communicate symptoms, and learn about treatments and therapies to participate in shared decision-making. I discuss a research program focused on the design of collaborative systems to support shared understandings of a patient's health and discuss a range of current projects in this unique interdisciplinary space. A. BackgroundThe health services industry maintains close connections with research in such areas as Human-Computer Interaction (HCI) Software Engineering, Machine Learning and Biomedical Informatics, among others. Taking a traditional approach, researchers identify opportunities to enhance specific work practices with novel technologies. Oftentimes, especially in the fields of HCI and Software Engineering, researchers work with specific target users of potential technologies through formative approaches, iterative user-centered design and evaluation studies, which often lead to prototypes. Occasionally, these prototypes are further studied in deployments that inspire new products and shape the way health care is delivered. In many cases, however, these efforts often consider the experiences of particular users of healthcare systems-the initial focus on a target user group does not extend beyond that group, and opportunities to study adoption and use of the technologies do not consider the variety of stakeholders influencing actual practice. Of course, these limitations in turn narrow opportunities to incorporate lessons learned from the study of multiple stakeholders into the design of new technologies-and to envision new innovations based on collaborative practices.In contrast to this approach, our research group, focused on human-centered health informatics, has cultivated efforts to facilitate and study "shared understandings of personal health"-in which collaborative systems are designed through ongoing efforts to assess and support patients' information and communication needs. Our efforts seek empirical understandings of these needs, by studying communication, use of novel systems, and perspectives of a variety of stakeholders.Our recent collaborative projects include the School of Interactive Computing and the Institute for People and Technology (IPaT), at Georgia Institute of Technology (Georgia Tech), along with partners at Emory Healthcare, and Children's Healthcare of Atlanta (CHOA). Longer-running collaborative efforts include the NewYork-Presbyterian (NYP) as well as Microsoft Research and MedStar Institute for Innovation. As desc...