Adapting the stage-based model of personal informatics for low-resource communities in the context of type 2 diabetes.

Abstract

Growing availability of self-monitoring technologies creates new opportunities for collection of personal health data and their use in personalized health informatics interventions. However, much of the previous empirical research and existing theories of individuals' engagement with personal data focused on early adopters and data enthusiasts. Less is understood regarding ways individuals from medically underserved low-income communities who live with chronic diseases engage with self-monitoring in health. In this research, we adapted a widely used theoretical framework, the stage-based model of personal informatics, to the unique attitudes, needs, and constraints of low-income communities. We conducted a qualitative study of attitudes and perceptions regarding tracking and planning in health and other contexts (e.g., finances) among low-income adults living with type 2 diabetes. This study showed distinct differences in participants' attitudes and behaviors around tracking and planning, as well as wide variability in their sense of being in charge of different areas of one's life. Ultimately, we found a strong connection between these two: perceptions of being in charge seems to be strongly connected to an individual's proactive or reactive tracking and planning in that area. Whereas individuals with a greater sense of being in charge of their health were more proactive, meaning they were likely to engage with all the stages of personal informatics model on their own, those with less of a sense of being in charge were more likely to be reactive-relying on their healthcare providers for several critical stages of self-monitoring (deciding what data to collect, integrating data from multiple sources, reflecting over patterns in collected data, and arriving at conclusions and implications for action). Perhaps as a result, these individuals were less likely to experience increases in self-awareness and self-knowledge, common motivating factors to engaging in self-monitoring in the future. We argue that adapting this framework in a way that highlights gaps in individuals' engagement has a number of important implications for future research in biomedical informatics and for the design of new interventions that promote engagement with self-monitoring, and that are robust in light of fragmented engagement.