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Challenges to Developing and Implementing Policies for Adolescent Online Portal Access
Bryan A Sisk1,2, Alison L Antes2, Christine Bereitschaft1
1Division of Hematology and Oncology, Department of Pediatrics.
Pediatrics
|May 3, 2023
Summary
Adolescent electronic health portal access policies vary significantly, with many challenges in development and implementation. Future work should focus on creating consistent policies and understanding patient and parent needs.
Area of Science:
- Health Informatics
- Pediatric Healthcare
- Digital Health
Background:
- The 21st Century Cures Act enables electronic health information access for adolescents and parents via online portals.
- Limited research exists on adolescent portal access policies post-Cures Act implementation.
Purpose of the Study:
- To evaluate adolescent electronic health portal access policies and identify challenges in their development and implementation.
- To understand the current landscape of adolescent portal access in US pediatric hospitals.
Main Methods:
- Structured interviews were conducted with informatics administrators from US hospitals with at least 50 pediatric beds.
- Thematic analysis was used to identify challenges in developing and implementing adolescent portal policies.
Main Results:
- Interviews with 65 informatics leaders across 63 pediatric hospitals revealed wide variation in adolescent and parental portal access policies.
- Filtering of sensitive information in parental portals ranged from unfiltered access (14%) to limited access (43%).
- Key challenges included legislative issues, confidentiality concerns, clinician preferences, institutional investment, vendor focus, technical hurdles, and user education.
Conclusions:
- Adolescent portal access policies exhibit significant variation across and within states.
- Informatics administrators face numerous challenges in developing and implementing these policies.
- Future efforts should aim for intrastate policy consensus and involve parents and adolescents to align with their needs and preferences.
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