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CC BY-NC-ND 4.0 · Appl Clin Inform 2023; 14(03): 555-565
DOI: 10.1055/a-2084-4650
Adolescent Privacy and the Electronic Health Record

Sharing Clinical Notes while Protecting Adolescent Confidentiality and Maintaining Parental Insight

Jonathan Elias
1   Department of Primary Care, Weill Cornell Medicine, New York, New York, United States
2   Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, United States
,
J. Travis Gossey
2   Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, United States
3   Department of Medicine, Weill Cornell Medical Center, New York, New York, United States
,
Wenna Xi
2   Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, United States
,
Marianne Sharko
2   Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, United States
4   Department of Pediatrics, Weill Cornell Medical Center, New York, New York, United States
,
Laura Robbins
5   Department of Pediatrics, Morgan Stanley Children's Hospital, New York, New York, United States
,
Susan Bostwick
4   Department of Pediatrics, Weill Cornell Medical Center, New York, New York, United States
,
Jane Chang
4   Department of Pediatrics, Weill Cornell Medical Center, New York, New York, United States
,
Virginia Lorenzi
6   NewYork-Presbyterian Hospital, New York, New York, United States
7   Department of Biomedical Informatics, Columbia University Irving Medical Center, New York, New York, United States
,
Vasiliki Giatzikis
6   NewYork-Presbyterian Hospital, New York, New York, United States
,
Jean Scofi
2   Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, United States
8   Department of Emergency Medicine, Weill Cornell Medical Center, New York, New York, United States
,
Richard Trepp
9   Department of Emergency Medicine, Columbia University Irving Medical Center, New York, New York, United States
,
Rachel Lewis
10   Department of Pediatrics, ColumbiaDoctors, New York, New York, United States
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Abstract

Background The 21st Century Cures Act mandates sharing electronic health records (EHRs) with patients. Health care providers must ensure confidential sharing of medical information with adolescents while maintaining parental insight into adolescent health. Given variability in state laws, provider opinions, EHR systems, and technological limitations, consensus on best practices to achieve adolescent clinical note sharing at scale is needed.

Objectives This study aimed to identify an effective intervention process to implement adolescent clinical note sharing, including ensuring adolescent portal account registration accuracy, across a large multihospital health care system comprising inpatient, emergency, and ambulatory settings.

Methods A query was built to assess portal account registration accuracy. At a large multihospital health care system, 80.0% of 12- to 17-year-old patient portal accounts were classified as inaccurately registered (IR) under a parent or registration accuracy unknown (RAU). To increase accurately registered (AR) accounts, the following interventions were pursued: (1) distribution of standardized portal enrollment training; (2) patient outreach email campaign to reregister 29,599 portal accounts; (3) restriction of access to remaining IR and RAU accounts. Proxy portal configurations were also optimized. Subsequently, adolescent clinical note sharing was implemented.

Results Distribution of standardized training materials decreased IR and increased AR accounts (p = 0.0492 and 0.0058, respectively). Our email campaign (response rate: 26.8%) was most effective in decreasing IR and RAU accounts and increasing AR accounts (p < 0.002 for all categories). Remaining IR and RAU accounts, 54.6% of adolescent portal accounts, were subsequently restricted. Postrestriction, IR accounts continued declining significantly (p = 0.0056). Proxy portal enhancements with interventions deployed increased proxy portal account adoption.

Conclusion A multistep intervention process can be utilized to effectively implement adolescent clinical note sharing at a large scale across care settings. Improvements to EHR technology, portal enrollment training, adolescent/proxy portal settings, detection, and automation in reenrollment of inaccurate portal accounts are needed to maintain integrity of adolescent portal access.

Keywords

adolescent - patient portals - confidentiality - electronic health records

Protection of Human and Animal Subjects

This project was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects. All information regarding this project involved the use of deidentified personal health information and was exempt from review by the Weill Cornell Medicine Institutional Review Board.


Supplementary Material



Publication History

Received: 14 December 2022

Accepted: 19 April 2023

Accepted Manuscript online:
02 May 2023

Article published online:
26 July 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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