(Preprint)

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.