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

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.

Evaluation of a Large Language Model to Identify Confidential Content in Adolescent Encounter Notes

“…A random sample of visit notes were selected from outpatient adolescent encounters at an academic pediatric health system between January 1, 2016, and December 31, 2019. The notes were manually reviewed by pediatricians specifically trained in adolescent confidentiality laws to identify confidentiality disclosures (interrater agreement: Fleiss κ = 0.50) . Based on these pediatrician annotations, the notes were classified as including or not including confidential content.…”

“…2 A persistent challenge is withholding confidential information recorded as free text in visit notes, approximately 21% of which have been shown to contain confidential information. 3 Electronic health records lack functionality to identify and filter such information. While natural language processing algorithms have shown promise, 4 there is no widely accessible solution.…”

“…The notes were manually reviewed by pediatricians specifically trained in adolescent confidentiality laws to identify confidentiality disclosures (interrater agreement: Fleiss κ = 0.50). 3 Based on these pediatrician annotations, the notes were classified as including or not including confidential content. The Stanford University Institutional Review Board deemed this cross-sectional study exempt from review and informed consent because it was not human participant research.…”

A Natural Language Processing Model to Identify Confidential Content in Adolescent Clinical Notes

“…Further discussion of the methodological details around this annotation process including labeling rubric, interrater reliability, and summary of confidential content identified are summarized in a related manuscript. 22 Since portions of the note were manually annotated, this process yielded two types of ground-truth labels for training and evaluation: a note-level label of whether the progress note as a whole contained any confidential information and sentence-level labels for the sentences that comprise the notes. Using an 80-20 training-test split, we evaluated two types of models: a note-based model and a sentence-based model.…”

Electronic Health Record Adolescent Confidentiality in a Safety Net Setting

“…6 A significant portion of adolescent care centers around confidential issues: one study estimates that 25% of adolescent patient notes contain confidential information. 7 Adolescent confidential care may be compromised by guardians accessing adolescent portal accounts. Studies suggest 64% to 80% of adolescent portal accounts are erroneously used directly by guardians.…”