Background: After enactment of the 21st Century Cures Act, many health care systems offer adolescents and parents access to electronic health information through online portals. Few studies have evaluated adolescent portal access policies since the implementation of the Cures Act.
Methods: We performed structured interviews with informatics administrators in US hospitals with ≥50 dedicated pediatric beds. We performed thematic analysis of challenges to developing and implementing adolescent portal policies.
Results: We interviewed 65 informatics leaders representing 63 pediatric hospitals, 58 health care systems, 29 states, and 14 379 pediatric hospital beds. Most hospitals provided portal access to adolescents (86%) and parents (95%). Filtering of results sent to parental portals ranged widely, with 14% providing unfiltered access, 31% performing minimal filtering for sensitive information, and 43% offering limited access. Portal access policies also varied widely within states. Challenges to developing policies included legislation and compliance issues, tension between confidentiality and usefulness, clinicians' preferences and concerns, limited understanding and investment of institutions in pediatric issues, and limited focus of vendors on pediatric issues. Challenges to implementing policies included technical challenges, educating end-users, potential for parental coercion, harms of bad news, complex enrollment processes, and informatics workforce limitations.
Conclusions: Adolescent portal access policies vary widely across and within states. Informatics administrators identified multiple challenges related to developing and implementing adolescent portal policies. Future efforts should strive to develop intrastate consensus on portal policies and to engage parents and adolescent patients to better understand preferences and needs.
Copyright © 2023 by the American Academy of Pediatrics.