Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory

Abstract

Background Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care 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 (CRC) survivors. Methods We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. Results Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of 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. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice. Conclusions PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.