JMIR Publications

ABSTRACT

Background:

Cancer care coordination addresses the fragmented and inefficient care of individuals with complex care needs. The complexity of care coordination can be aided with innovative technology. Few examples of information technology (IT)-enabled care coordination exist beyond the conventional telephone follow-up. For this study, we implemented a custom-designed application, the “personal health network” (PHN)—a HIPAA-compliant social network built around a patient to enable patient-centered health and healthcare activities in collaboration with clinicians, care team members, caregivers and others designated by the patient—to facilitate a care coordination intervention for patients undergoing chemotherapy.

Objective:

The objective of this study was to understand patient experiences with the PHN technology and assess their perspectives on usability and usefulness of the PHN with care coordination during chemotherapy.

Methods:

A two-arm randomized clinical trial was conducted comparing the PHN and care coordination with care coordination alone over a six-month period beginning with the initiation of chemotherapy. A semi-structured interview guide was constructed based on a theoretical framework of technology acceptance addressing usefulness, usability, and the context of use of the technology within the participant’s life and healthcare setting. All participants in the intervention arm were offered interviews on completion of the study. Interviews were recorded and transcribed verbatim. Summative thematic analysis was completed for the transcribed interviews. Features of the applications were also evaluated.

Results:

27 interviews were completed. The resulting themes included the care coordinator as a partner in care; learning while sick; comparison of other technology to make sense of the PHN; communication; learning, usability; and usefulness. Users expressed that the nurse care coordinators were beneficial to them because they helped them stay connected to the care team and answered their questions. They shared that the mobile application gave them access to health information they were seeking. Users expressed that the mobile application would be more useful if it was fully integrated with the electronic health record.

Conclusions:

The findings highlight the value of care coordination from the perspectives of cancer patients undergoing chemotherapy and the important role of technology, such as the PHN, in enhancing this process by facilitating better communication and access to information regarding their illness. Clinical Trial: NCT02238951