Provider Perspectives on Adolescent Confidentiality and the Electronic Health Record Postimplementation of the 21st Century Cures Act Final Rule

Rachel L Goldstein; Sarah J Mermelstein; Bryan A Sisk; Jennifer L Carlson

doi:10.1016/j.jadohealth.2023.11.006

Provider Perspectives on Adolescent Confidentiality and the Electronic Health Record Postimplementation of the 21st Century Cures Act Final Rule

J Adolesc Health. 2023 Dec 13:S1054-139X(23)00587-6. doi: 10.1016/j.jadohealth.2023.11.006. Online ahead of print.

Authors

Rachel L Goldstein¹, Sarah J Mermelstein², Bryan A Sisk³, Jennifer L Carlson⁴

Affiliations

¹ Division of Adolescent Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California. Electronic address: rachelg2@stanford.edu.
² Division of Adolescent Medicine, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri.
³ Division of Hematology and Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri; Bioethics Research Center, Department of Medicine, Washington University School of Medicine, St. Louis, Missouri.
⁴ Division of Adolescent Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California.

PMID: 38099899
DOI: 10.1016/j.jadohealth.2023.11.006

Abstract

Purpose: The 21st Century Cures Act Final Rule mandates increased transparency and accessibility of the Electronic Health Record (EHR). This mandate has exacerbated tensions in adolescent healthcare between transparency and confidentiality. This study evaluates clinicians' perspectives on how well the EHR maintains confidentiality for adolescents in the post-Cures Act era.

Methods: A web-based survey was distributed via the national listserv of the Society for Adolescent Health and Medicine in March-April 2022. English-speaking members practicing in the Unites States who used an EHR to document clinical visits with minors were eligible. The survey included questions about EHR training, features, and approach to information sharing with adolescent patients and proxies.

Results: Participants included 97 respondents from 32 states. Most participants were physicians (98%) and identified themselves as attending (89%). Several EHR vendors were represented, although the majority used Epic (76%). As has been seen in prior studies, there remains significant variability in approaches to patient portal access for adolescent patients and their adult proxies. Respondents report that training around adolescent-specific privacy issues remains infrequent and is perceived as inadequate. Adolescent providers, despite feeling confident in navigating the EHR generally, continue to report low rates of confidence in how well their EHR may protect adolescent privacy.

Discussion: Clinicians have persistent concerns about adolescent confidentiality postimplementation of the 21st Century Cures Act. Sharing sufficient information while protecting adolescent confidentiality might require standardization by EHR vendors to improve granularity of proxy information sharing. Healthcare institutions must also commit to training providers on management of adolescent confidentiality.

Keywords: 21st century Cures Act; Adolescent; Confidentiality; Electronic health record; Patient portal.