Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: May 19, 2023
Date Accepted: Feb 14, 2024
Guiding Principles for Adolescent Online Portal Access Policies: Perspectives of Informatics Administrators
ABSTRACT
Background:
Online patient portals are a tool that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents.
Objective:
We aimed to assess the perspectives of informatics administrators on guiding principles for development of online healthcare portal access policies in adolescent healthcare.
Methods:
We interviewed informatics administrators from US hospitals with > 50 dedicated pediatric beds. We performed thematic analysis of guiding principles for developing and implementing adolescent portal access policies.
Results:
We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 healthcare systems, 29 states, and 14,379 pediatric hospital beds. Participants described nine guiding principles related to 3 overarching themes: (1) Balancing confidentiality and other care needs; (2) Balancing simplicity and granularity; and (3) Collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety, and what role parents should play in supporting the adolescent’s healthcare. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators.
Conclusions:
Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and utility of the portal. Portal access policies must prioritize the adolescent’s health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers. Clinical Trial: Not Applicable
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© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.