JMIR Publications

ABSTRACT

Background:

With increased sharing of electronic health information as required by the 21st Century Cures Act, there is increased risk of breaching patient or parent/guardian confidentiality. The prevalence of sensitive terms in clinical notes is not known.

Objective:

The aim of this study is to define sensitive terms that represent documentation of content that may be private and determine prevalence and characteristics of provider notes that contain sensitive terms.

Methods:

Using keyword expansion, we defined a list of 781 sensitive terms. We searched all provider history and physical, progress, consult, and discharge summary notes for patients age 0-21 years written between January 1, 2019 to December 31, 2019 for direct string match of sensitive terms. We calculated prevalence of notes with sensitive terms and characterized clinical encounters and patient characteristics.

Results:

Sensitive terms were present in notes from every clinical context in all pediatric ages. Terms related to mental health category were most used overall (19.5%), but terms related to substance abuse and reproductive health were most common in patients age 0-3 years. History and physical notes (57.1%) and ambulatory progress notes (47.1%) were most likely to include sensitive terms. The highest prevalence of notes with sensitive terms was found in pain management (85.4%) and child abuse (85.2%) clinics.

Conclusions:

Notes containing sensitive terms are not limited to adolescent patients, specific note types, or certain specialties. Recognition of sensitive term(s) across all ages and clinical settings complicates efforts to protect patient and caregiver privacy in the era of information blocking regulations.