Access to Adolescent Electronic Health Information: Navigating Complex Care and Complex Family Communication Patterns

Abstract: This commentary reflects on 12 narratives from parents and adolescent children on the topic of access to adolescent electronic health information (EHI). The storytellers highlight the value of EHI in improving care coordination, decision-making, and communication. However, access to adolescent EHI raises ethical dilemmas regarding autonomy, privacy, and parental involvement. While most parents and adolescents support some level of parental access, the narratives reveal nuanced views on how and when this access should be restricted. Barriers faced by parents of children with complex healthcare needs are also discussed, alongside recommendations for improving EHI policies. These include reducing logistical burdens and fostering open communication between families and healthcare providers.