Objective Patient use of on-line electronic medical records holds the potential to improve health outcomes. The purpose of this study is to discover how patients living with chronic inflammatory bowel disease (IBD) value Internet-based patient access to electronic patient records.

Design Qualitative, exploratory descriptive study using in-depth interviews and focus groups of a total of twelve patients with IBD of at least one-year duration at University Health Network (UHN), a tertiary care center in Toronto, Ontario.

Results Four themes have been elucidated that comprise a theoretical framework of patient-perceived ICT usefulness: Promotion of a sense of illness ownership, of patient-driven communication, of personalized support, and of mutual trust.

Conclusions For chronic IBD patients, simply providing access to electronic medical records has little usefulness on its own. Useful technology for IBD patients is multi-faceted, self-care promoting, and integrated into the patient's already existing health and psycho-social support infrastructure. The four identified themes can serve as focal points for the evaluation of information technology designed for patient use, thus providing a patient-centered framework to developers seeking to adapt existing EMR systems to patient access and use for the purposes of improving healthcare quality and health outcomes. Further studies in other populations are needed to enhance generalizability of the emergent theory.