The goal of this research is to create creating informatics systems that build public understanding of the experience of managing a chronic health condition.
(Taken from the project summary of a recent NSF CAREER Grant Application)
Individuals suffering from chronic health conditions represent a growing segment of the population. In 2012 the CDC estimated that more than 9% of Americans suffered from diabetes, costing the country $245 billion dollars annually. Perhaps more troublingly, more than 33% of adults and 17% of youth in the United States are obese . Diabetes and obesity are in turn connected to a growing number of other health risks including cancer and heart disease. These two interrelated chronic health conditions remain particularly difficult to resolve in this country because the primary treatment for them involves behavioral interventions, rather than explicit medical care.
The problem with behavioral interventions is that individual behavior does not occur in a vacuum; it is continually negotiated within a social context and often impacted by socio-economic factors that are intractable to individual changes in behavior. Further, compelling psychological evidence suggests that the underlying assumptions surrounding behavioral interventions as a treatment for diabetes and obesity are grounded in an incorrect model of self-control. Specifically, those suffering from these conditions are often told that they are at fault for their own health problems, and that it is their own lack of self-control that has put them in this situation. However, new approaches to self-control argue that willpower is a finite resource that is expended over the course of a person’s day in a process known as ego–depletion. Individuals being asked to regulate their own behavior as the primary treatment for diabetes and obesity are often fighting against significant external pressures, both social and economic, while drawing on a finite amount of the cognitive resources required to meaningfully alter their routines.
I argue that the solution to this problem lies in changing the scale of the behavioral intervention to include the entire context in which these chronic health problems are situated, rather than focusing solely on the individuals whose health problems are a symptom of this context. The techniques of transformative play are ideally suited to creating the kind of broader experiential awareness needed to begin changing the social and cultural contexts that produce these chronic health conditions. In particular, I hold that a failure of empathy on the part of medical practitioners, along with a tendency to stigmatize these conditions (or to disregard non-behavioral factors such as genetic predisposition) leads to a “blame and shame” approach to those afflicted by both obesity and diabetes. A growing body of evidence shows the negative impact of social stigma on the health of a population in general, and on children in particular. The transformative play-based intervention proposed in this research seeks to develop empathy among medical practitioners who treat diabetes and obesity, and among the general public, where many of the most harmful social conditions supporting these epidemics arise.
I’ve identified this area as a focus for my research because it is highly amenable to interventions designed to produce understanding and increase empathy, two things that transformative play is explicitly designed to accomplish. For this reason, the goal of this intervention is to develop a system intended for use by broad publics, rather than the more narrow community of patients that are often the audience for health informatics systems. By developing a serious game intended to communicate the experience of suffering from a chronic health condition to those who have not had to experience this themselves, I hope to start changing some of the more insidious and pervasive social behaviors that isolate and stigmatize the victims of these illnesses. One desired outcome of this is to encourage the development of better support systems for individuals managing these conditions.