Patterns and Disparities in Caregiver Access to Hospitalized Children's Clinical Notes

Area of Science:

• Pediatric Health Informatics
• Health Equity
• Patient Engagement

Background:

• Parental access to pediatric hospitalization notes can enhance communication and understanding.
• Limited research exists on which specific caregivers access these notes.
• Understanding caregiver access patterns is crucial for equitable engagement.

Purpose of the Study:

• Identify demographic and clinical factors influencing caregiver access to pediatric hospitalization notes.
• Determine which types of notes are most frequently viewed by caregivers.
• Promote equitable caregiver engagement and understanding during hospitalizations.

Main Methods:

• Retrospective analysis of pediatric hospitalization data from two academic children's hospitals (April 2021-April 2022).
• Examined demographic and clinical data of patients whose caregivers activated patient portals and viewed clinical notes.
• Analyzed note viewing behavior in relation to patient characteristics and note type.

Main Results:

• Out of 767,642 notes, only 4.5% were viewed, despite 60% of patients having activated portals.
• Black and Hispanic/Latino patients, Spanish speakers, and those with non-English/Spanish primary languages had significantly lower odds of notes being viewed.
• Patients with Medicaid insurance had lower odds of notes being viewed compared to those with private insurance.
• Emergency department, History and Physical, and discharge summary notes were most viewed, often after discharge.

Conclusions:

• A small fraction of hospitalization notes were viewed by caregivers, even with high portal activation rates.
• Significant disparities in accessing and viewing pediatric medical information exist based on race, ethnicity, language, and insurance status.
• Further research is essential to address barriers and ensure equitable access to pediatric health information for all caregivers.