The uses of personal health records for communication among colorectal cancer survivors, caregivers, and providers (Preprint)

BACKGROUND Personal Health Records (PHRs) may be useful for patient self-management, as well as participation in communication with their caregivers and healthcare providers. As each potential participant’s role is different, their perception of the best uses of a PHR may vary. OBJECTIVE The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer survivors. METHODS We explored group perceptions of a colorectal cancer (CRC) PHR prototype. Scenario-based testing across eight use cases, with semi-structured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and healthcare providers. Providers included oncology, gastroenterology, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. RESULTS All groups noted the added value of linking the PHR to an electronic health record; tracking follow-up testing; and secure messaging. Patients and caregivers valued the journal as a tool for reflection and to receive emotional support. Providers felt the PHR would facilitate patient-physician communication, but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. CONCLUSIONS PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Patients and providers should establish shared expectations about the optimal use of the PHR in the patient-provider relationship.