One-Size-Fits-Nobody: Pediatric Access to Electronic Health Information

Abstract: Providing adolescents with access to their electronic health information presents both opportunities and challenges for children and families. In an effort to protect the medical privacy of adolescents, some state policies provide adolescents with access to their electronic health information based solely on age, and exclude parents from seeing this information unless adolescents permit it, with both positive and negative consequences. This commentary reviews the genesis of these policies and discusses perceived benefits, struggles, and frustrations through the lens of twelve narratives written by a diverse array of patients and parents. These stories demonstrate the widely variable impact of such policies depending on family dynamics, child development, and medical complexity, among many factors. By intimately illuminating the experience of adolescents and parents, these powerful narratives suggest that a more nuanced, ethically-sensitive, and principled approach to policies regulating pediatric access to electronic health information can help provide that information in a less distressing, and more meaningfully empowering manner for patients and families.