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Appl Clin Inform 2023; 14(02): 337-344
DOI: 10.1055/s-0043-1767682
Adolescent Privacy and the Electronic Health Record

The Prevalence of Confidential Content in Adolescent Progress Notes Prior to the 21st Century Cures Act Information Blocking Mandate

Michael Bedgood
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
3   California Department of Public Health, Coronavirus Science Branch, Richmond, California, United States
,
Naveed Rabbani
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Conner Brown
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Rachel Goldstein
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Jennifer L. Carlson
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Ethan Steinberg
4   Stanford Center for Biomedical Informatics Research, Stanford University, Palo Alto, California, United States
,
Austin Powell
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Natalie M. Pageler
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
,
Keith Morse
1   Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California, United States
2   Information Services, Stanford Children's Health, Palo Alto, California, United States
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Abstract

Background The 21st Century Cures Act information blocking final rule mandated the immediate and electronic release of health care data in 2020. There is anecdotal concern that a significant amount of information is documented in notes that would breach adolescent confidentiality if released electronically to a guardian.

Objectives The purpose of this study was to quantify the prevalence of confidential information, based on California laws, within progress notes for adolescent patients that would be released electronically and assess differences in prevalence across patient demographics.

Methods This is a single-center retrospective chart review of outpatient progress notes written between January 1, 2016, and December 31, 2019, at a large suburban academic pediatric network. Notes were labeled into one of three confidential domains by five expert reviewers trained on a rubric defining confidential information for adolescents derived from California state law. Participants included a random sampling of eligible patients aged 12 to 17 years old at the time of note creation. Secondary analysis included prevalence of confidentiality across age, gender, language spoken, and patient race.

Results Of 1,200 manually reviewed notes, 255 notes (21.3%) (95% confidence interval: 19–24%) contained confidential information. There was a similar distribution among gender and age and a majority of English speaking (83.9%) and white or Caucasian patients (41.2%) in the cohort. Confidential information was more likely to be found in notes for females (p < 0.05) as well as for English-speaking patients (p < 0.05). Older patients had a higher probability of notes containing confidential information (p < 0.05).

Conclusion This study demonstrates that there is a significant risk to breach adolescent confidentiality if historical progress notes are released electronically to proxies without further review or redaction. With increased sharing of health care data, there is a need to protect the privacy of the adolescents and prevent potential breaches of confidentiality.

Keywords

adolescent medicine - confidentiality - 21st Century Cures Act - information blocking - clinical documentation - communication

Protection of Human and Animal Subjects

The study was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects, and was determined nonhuman subjects research by Stanford University Institutional Review Board.




Publication History

Received: 12 January 2022

Accepted: 16 February 2023

Article published online:
03 May 2023

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