Abstract

PURPOSE Modeling passively collected smartphone sensor data (called digital phenotyping) has the potential to detect distress among family caregivers and patients with advanced cancer and could lead to novel clinical models of cancer care. The purpose of this study was to assess the feasibility and acceptability of collecting passive smartphone data from family caregivers and their care recipients with advanced cancer over 24 weeks. METHODS This was an observational feasibility study. Family caregivers and patients with advanced cancer were recruited through clinic or via social media and downloaded a digital phenotyping application (Beiwe) to their smartphones that passively collected sensor data over 24 weeks. Feasibility was evaluated by quantifying enrollment and retention and the quantity of acquired data. Acceptability was assessed through post-24 week qualitative interviews. RESULTS Of 178 caregiver and patient dyads approached, 22.5% of caregivers (n = 40) and 10.1% of patients (n = 18) both consented to the study and successfully downloaded the application, with most recruited through social media (93%). Of 24 weeks (168 days), the median number of days that data were received was 141 days. Interviews yielded three themes: (1) experiences with study procedures were generally positive despite some technical challenges; (2) security and privacy concerns were minimal, mitigated by clear explanations, trust in the health care system, and privacy norms; and (3) a clinical model that used passive smartphone monitoring to automatically trigger assistance could be beneficial but with concern about false alarms. CONCLUSION This pilot study of collecting passive smartphone data found mixed indicators of feasibility, with suboptimal enrollment rates, particularly via clinic, but positive retention and data collection rates for those who did enroll. Participants had generally positive views of passive monitoring.