Managing personal information over the long-term, or not? Experiences by type 1 diabetes patients

Abstract

The management of chronic conditions is often accompanied with the long-term management of health information. By examining how patients manage their health information over time, we can develop guidelines and design technologies to support this patient work, and also contribute the patients' perspective to the existing literature on personal information management. This study explored the long-term personal information management (LTPIM) behaviors of people living with chronic conditions. We conducted semi-structured interviews and photo-documentation with 23 experienced, type 1 diabetes patients. This mixed methods approach helped us identify five LTPIM styles, including designer, achiever, leader, curator and monitor. Those LTPIM styles differ in the information tools people used, the intensity of long-term information management behaviors, and their motivators. The nuances in those LTPIM styles are unique to the context of chronic conditions, but the categorization of those LTPIM styles can potentially be transferable to LTPIM in non-health contexts. Our results support previous literature on the major differences between LTPIM and personal information management in general. Further, we point to issues in current technologies used by patients for LTPIM, indicating a space for improvement.