“It’s Not Just Technology, It’s People”: Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management (Preprint)

Abstract

Background: Chronic illness is a substantial public health burden and the day-to-day work of a person with chronic illness is central to illness management. However, although management programs are available to train people to manage their chronic illnesses, those programs rarely provide people with sufficient guidance on implementing fine-grained management strategies. This lack of guidance transfers much of the burden of day-to-day management practices to people with chronic illness. Objective: To decrease the management burden many people have created technological solutions, but we claim that to be maximally effective and tailored to people's needs, those solutions need to be informed by a model that integrate patient work and self-management frameworks with personal health informatics models. We see an opportunity to improve personal health informatics models to (1) incorporate the ongoing nature of management work, and (2) append a social dimension to more accurately depict the context of illness management. Methods:We used qualitative methods to analyze the chronic illness management practices of 63 people through the lenses of self-management and informatics frameworks. Results: Analysis results are distilled into a new Conceptual Model of Shared Health Informatics. We describe the people and work involved in chronic illness management and contribute a Conceptual Model of Shared Health Informatics depicting the process of chronic illness management in a social context. Conclusions: Through insight into management work provided by our Conceptual Model of Shared Health Informatics, technology designers and implementers can improve the quality of chronic illness management tools to ensure confident and capable management of chronic illness.