Abstract

BackgroundCancer care coordination addresses the fragmented and inefficient care of individuals with complex care needs. The complexity of care coordination can be aided by innovative technology. Few examples of information technology-enabled care coordination exist beyond the conventional telephone follow-up. For this study, we implemented a custom-designed app, the Personal Health Network (PHN)—a Health Insurance Portability and Accountability Act-compliant social network built around a patient to enable patient-centered health and health care activities in collaboration with clinicians, care team members, caregivers, and others designated by the patient. The app facilitates a care coordination intervention for patients undergoing chemotherapy.ObjectiveThis study aimed to understand patient experiences with PHN technology and assess their perspectives on the usability and usefulness of PHNs with care coordination during chemotherapy.MethodsA two-arm randomized clinical trial was conducted to compare the PHN and care coordination with care coordination alone over a 6-month period beginning with the initiation of chemotherapy. A semistructured 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 health care setting. All participants in the intervention arm were interviewed on completion of the study. Interviews were recorded and transcribed verbatim. A summative thematic analysis was completed for the transcribed interviews. Features of the app were also evaluated.ResultsA total of 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 app gave them access to the health information they were seeking. Users expressed that the mobile app would be more useful if it was fully integrated with the electronic health record.ConclusionsThe 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.

Highlights

  • BackgroundCancer care in the United States is fragmented [1,2,3,4,5] and complex [6]

  • All participants were followed up for 6 months after enrollment. Those in the intervention arm received an 8.4-inch Samsung Galaxy tablet with Wi-Fi and 4G data plan

  • There have been few randomized controlled trials (RCTs) of mobile health (mHealth) in cancer care coordination described in the literature, and fewer still that involved clinicians and patients in the design and testing of the technology [33]

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Summary

Introduction

BackgroundCancer care in the United States is fragmented [1,2,3,4,5] and complex [6]. Engaging health care teams to actively participate in care coordination can be beneficial to patients in areas of improving communication, building trust, and facilitating transitions in care [10,11]. Successful care coordination involves effective communication among patients, their family members, and their care providers [12,13]. Communication between cancer patients and their health care team members can affect important health care decisions [14,15,16]. Patients face challenges such as lack of effective ways to document their health information while at the clinic or when they are away from home and lack of access care-related information [17]. The app facilitates a care coordination intervention for patients undergoing chemotherapy

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