Understanding Individual and Collaborative Problem-Solving with Patient-Generated Data: Challenges and Opportunities

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.