Adolescent and Caregiver use of a Tethered Personal Health Record System

Supporting adolescent patient engagement in care is an important yet underexplored topic in consumer health informatics. Personal Health Records (PHRs) show potential, but designing PHR systems to accommodate both emerging adults and their parents is challenging. We conducted a mixed-methods study with teenage adolescent patients (ages 13-17) with cancer and blood disorders, and their parents, to investigate their experiences with My-Chart, a tethered PHR system. Through analyses of usage logs and independently-conducted surveys and interviews, we found that patients and parents both valued MyChart, but had different views about the role of the PHR for care communication and management, and different attitudes about its impact on the patient's ability to manage care. Specific motivations for using MyChart included patient-parent coordination of care activities, communication around hospital encounters, and support for transitioning to adult care. Finally, some parents had concerns about certain diagnostic test results being made available to their children.