Making effective use of patient-generated data (PGD) is challenging for both patients and providers. Designing systems to support collaborative and individual use of PGD is a topic of importance in CSCW, considering the limitations of informatics tools. To inform better system design, we conducted a study including focus groups, observations and interviews with patients and providers to understand how PGD is interpreted and used. We found that while PGD is useful for identifying and solving disease-related problems, the following differences in patient-provider perceptions challenge its effective use - different perceptions about what is a problem, selecting what kinds of problems to focus on, and using different data representations. Drawing on these insights, we reflect on two specific conceptualizations of disease management behavior (sensemaking and problem-solving) as they relate to data specific activities of patients and providers and provide design suggestions for tools to support collaborative and individual use of PGD.
Clinical data augmented with contextual data can help patients with chronic conditions make sense of their disease. However, existing tools do not support interpretation of multiple data streams. To better understand how individuals make sense of clinical and contextual data, we interviewed patients with Type 1 diabetes and their caregivers using context-enhanced visualizations of patients' data as probes to facilitate interpretation activities. We observed that our participants performed four analytical activities when interpreting their data -- finding context-based trends and explaining them, triangulating multiple factors, suggesting context-specific actions, and hypothesizing about alternate contextual factors affecting outcomes. We also observed two challenges encountered during analysis -- the inability to identify clear trends challenged action planning and counterintuitive insights compromised trust in data. Situating our findings within the existing sensemaking frameworks, we demonstrate that sensemaking can not only inform action but can guide the discovery of information needs for exploration. We further argue that sensemaking is a valuable approach for exploring contextual data. Informed by our findings and our reflection on existing sensemaking frameworks, we provide design guidelines for sensemaking tools to improve awareness of contextual factors affecting patients and to support patients' agency in making sense of health data.
Creating actionable plans has been shown to be helpful in promoting physical activity. However, little rèsearch has been done on how best to support the creation and execution of plans. In this paper, we interviewed 16 participants to study the role that context plays in the formulation and execution of plans for physical activity. Our findings highlight nuanced ways that contextual factors interact with each other and with individual differences to impact planning. We propose the notion of sweet spots to encapsulate how particular contextual factors converge to create optimal states for performing physical activities. The concept of sweet spots helped us to better understand the creation and execution of plans made by our participants. We present design guidelines to show how sweet spots can help support physical activity planning and guide the design of context-based tools for planning support.
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