College students and patient work: Health information management by emerging young adults

Abstract

College students with a life experience of chronic illness and impairments grow into young adulthood as health information monitors as well as communicators with healthcare professionals. This interview study focused on the health information management practices of college and graduate students living with disabilities and chronic illness. SEIPS (Systems Engineering Initiative for Patient Safety), a work system model drawn from human factors engineering, was used as a conceptual framework for qualitative analysis. This revealed the importance of other people, particularly parents, in patients' information worlds. Digital technologies were ubiquitous; analog tools from business cards to binders were also key components of students' information systems. Using the SEIPS structure to interrogate the data allowed an understanding of how health experiences are integrated into everyday life. The findings of this research may provide health information technology designers and information science researchers insight into how to meet the needs of this population.