The Personal Health Network Mobile App for Chemotherapy Care Coordination: Qualitative Evaluation of a Randomized Clinical Trial

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 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. Objective This 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. Methods A 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. Results A 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. 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.

People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: A narrative review

“…Adopting the lens of Feather et al's (2016) concept of usability inquiry, five themes emerged from the literature published in the past decade. Several studies show that people with cancer appreciated the role of technology in helping them to learn new information about being unwell and their body's response as they were dealing with it (Gustavell et al, 2020;Hauffman et al, 2020;Ngo et al, 2020;Ownsworth et al, 2020;Ure et al, 2020), which was found to be particularly helpful post-diagnosis or at the commencement of cancer treatment. Evidence shows that people with cancer and their family caregivers may not process information when provided by their healthcare team due feeling emotionally overwhelmed and overloaded with new information (Den Bakker et al, 2018;Ream et al, 2013) or perceived as being poorly co-ordinated (Lubberding et al, 2015).…”

“…Some partners of people with breast cancer referred to it as an obligation which could invoke guilt if they did not complete their assigned activities. Conversely, other studies found that technology was easily embedded in their daily routine and personal schedule (Maguire et al, 2020;Ngo et al, 2020;Hauffman et al, 2020), appreciating the option to engage at a time and pace that suited them (Song et al, 2015;Smith et al, 2020a;Drott et al, 2016) and enabled the person with cancer to plan their schedule (Mohsen et al, 2021;Crafoord et al, 2020). Participants with cancer also found benefit from eHealth technology in that they gained time in their own lives and did not have to travel to their treatment centre for supportive care, whereby people with cancer perceived an additionalreduced burden on their family caregivers (Dalby et al, 2021;Ownsworth et al, 2020).…”

“…Personalised information was particularly valued for guiding participants with cancer in their individual experiences and goals, as well as the personalised self-care activities they should engage with at home (Gustavell et al, 2020;Ownsworth et al, 2020;Whitehead et al, 2020). eHealth-delivered information was particularly helpful at the beginning of the cancer care trajectory when symptoms were unfamiliar, however, several studies highlighted that its value lessened as treatment progressed and participants become accustomed to their symptom experience (Crafoord et al, 2020;Ngo et al, 2020;Hauffman et al, 2020). Two of the studies identified (Huberty et al, 2020;Wang et al, 2020) looked at the experience of general health apps used amongst people with cancer and underlined that participants desired more cancer-specific information.…”

“…Two of the studies identified (Huberty et al, 2020;Wang et al, 2020) looked at the experience of general health apps used amongst people with cancer and underlined that participants desired more cancer-specific information. Conversely, studies on people with cancer using cancer-specific technologies indicated that they desired more information on their exact stage and cancer type or psychological care information (Hauffman et al, 2020;Ngo et al, 2020).…”

“…eHealth technology was particularly meaningful at the beginning of cancer treatment when people with cancer were dealing with an unfamiliar and apprehensive event following their diagnosis that caused them to feel insecure (Crafoord et al, 2020). However, this perceived benefit can lessen over time as participants become accustomed to treatment and its related symptoms (Ngo et al, 2020). Remote symptom management and self-report technology in conjunction with healthcare professional feedback meant that patients felt that they were being cared for by their healthcare team, even if they had no evident symptoms or need for care (Crafoord et al, 2020;Gustavell et al, 2020;Högberg et al, 2015;McCann et al, 2009;Maguire et al, 2020;Whitehead et al, 2020).…”