Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients

Pediatrics
Fabienne BourgeoisSigall K Bell

Abstract

Sharing clinic notes online with patients and parents may yield many potential benefits to patients and providers alike, but the unprecedented transparency and accessibility to notes afforded by patient portals has also raised a number of unique ethical and legal concerns. As the movement toward transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and parent disagreements. With OpenNotes now reaching >21 000 000 US patients, pediatricians continue to query best portal practices. In this Ethics Rounds, we discuss 3 illustrative cases highlighting common pediatric OpenNotes concerns and provide guidance for organizations and clinicians regarding documentation practices and patient portal policies to promote patient engagement and information transparency while upholding patient and parent confidentiality and the patient- and/or parent-provider relationship.

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Citations

May 5, 2020·JAMA Internal Medicine·Catherine M DesRochesTom Delbanco
Sep 30, 2020·Journal of the American Medical Informatics Association : JAMIA·Chase R ParsonsFabienne C Bourgeois
Nov 27, 2018·Journal of the American Medical Informatics Association : JAMIA·Elizabeth T Toll
Sep 25, 2018·Journal of the American Medical Informatics Association : JAMIA·Jessica S AnckerLauren Wilcox
Feb 19, 2021·NPJ Genomic Medicine·Lauren Chad, Michael J Szego
Mar 9, 2021·Joint Commission Journal on Quality and Patient Safety·Tom Delbanco, Deborah Wachenheim
Apr 13, 2021·Informatics for Health & Social Care·Archana TapuriaVasa Curcin
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Apr 3, 2021·Hospital Pediatrics·Benjamin M ZellmerMichelle M Kelly
May 16, 2021·Journal of Medical Ethics·Charlotte BleaseCatherine M DesRoches
Aug 30, 2021·Academic Pediatrics·Kimberly A RandellMary Denise Dowd
Sep 20, 2018·Pediatrics·Chethan SarabuFabienne Bourgeois

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