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When is Confidential Not Confidential? The Informatics Specialists’ View on Adolescent Health Portal Access

May 3, 2023

In a recently released article in Pediatrics, Dr. Bryan Sisk and colleagues tackle the challenges and nuances of providing adolescents access to their own medical record information in “Adolescent Portal Policies” (10.1542/peds.2023-061213). You are likely aware that the 21st Century Cures Act enacted and signed into law in December 2016, requires that US healthcare providers give patients access to all of the health information in their electronic medical record without delay and without charge. This mandate seems very clear, except that state laws are permitted to supersede, which creates complexities for differential access for adolescents and their parents/guardians (hereafter “proxy” as in the paper), given state-to-state differences in adolescent confidentiality laws.

The unique characteristic of this qualitative study is that the author used structured interviews with informatics administrators from US children’s hospitals who were involved in developing or implementing adolescent portal policies. The study goal was to describe current policies and understand the challenges associated with developing and implementing policies that align with both the federal rule and state laws. The authors interviewed 65 individuals from 63 children’s hospitals across the US and used thematic analysis and Dedoose qualitative software (a cloud-based application) to organize and analyze the interview data.

The results are astonishing and reveal the sheer variety of approaches taken by institutions, and the inconsistencies of adolescent and proxy access permitted, even within states. Dr. Sisk and colleagues found a wide variety in each measure of access:

  • Age of access for adolescents (median age 13 years (21 hospital systems, 36%))
  • Adolescent permission requirement for proxy access (yes for 23 hospital systems, 40%)
  • Proxy permission requirement for adolescent access (yes for 18 hospital systems, 31%)
  • Level of access permitted (full, minimally filtered, limited access, and no access)

The information about technical issues is also fascinating – it makes sense that there are information technology challenges to differential access, and large vendors may be less interested in multiple solutions across health systems. If you are an adolescent health provider, this article is a must-read – I have just scratched the surface of what is here. Let us know your thoughts on this complex topic!

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