A qualitative study of how patients with type 2 diabetes use an electronic stand-alone personal health record

Abstract

Background: Patient use of personal health records (PHRs) to manage their health information has been proposed to enhance patient knowledge and empower patients to make changes in their self-care behaviors. However, there remains a gap in understanding about patients' actual PHR use behaviors. The purpose of this qualitative study was to explore how patients with type 2 diabetes used a PHR to manage their diabetes-related health information for self-care. Materials and Methods: Fifty-nine patients with type 2 diabetes were interviewed 3-6 months after receiving initial training on a free-of-charge, Web-based PHR. Interviews were audio-recorded, transcribed, and analyzed using an iterative process of in vivo coding, categorization, and theme development. Results: Nine themes emerged, three of which expressed positive experiences: complete and accessible record; increased awareness; and behavioral changes. The remaining six themes expressed negative experiences: out of sight, out of mind; I would have used it if I were sicker; economic, infrastructure, and computer literacy barriers; lack of patient-provider engagement; double tracking; and privacy and security concerns. Conclusions: Despite some potential positive benefits resulting from PHR use, several barriers inhibited sustained and effective use over time. Provider and patient education about the benefits of PHR use and about the potential for filling in information gaps in the provider-based record is key to engage patients and stimulate PHR adoption and use.