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

Despite evidence that parental access to pediatric hospitalization notes improves communication and parental understanding, no studies, to our knowledge, have examined which caregivers access hospitalization notes. We aim to identify demographic and clinical factors associated with caregivers viewing notes and describe notes that are most likely to be viewed to promote equitable caregiver engagement and understanding during hospitalizations.

We retrospectively analyzed data from all hospitalized children at 2 academic children's hospitals from April 2021 to April 2022 following implementation of immediate note availability. We analyzed demographic and clinical data of patients whose caregivers activated the patient portal and viewed clinical notes.

We included 767 642 notes from 22 580 hospitalizations for 17 148 unique patients. Overall, 34 186 notes (4.5%) were viewed. Most (60%) patients had their portal activated, but only 15% of those had 1 or more notes read. Decreased odds of viewing notes occurred for Black patients (odds ratio [OR] 0.48, 95% CI: 0.42-0.54), Hispanic/Latino patients (OR 0.67, 95% CI: 0.61-0.74), Spanish-speaking patients (OR 0.50, 95% CI 0.42-0.60), patients with a primary language other than English or Spanish (OR 0.35, 95% CI: 0.21-0.54), and patients with Medicaid compared with private insurance (OR 0.60, 95% CI: 0.55-0.65). Emergency department notes, History and Physical notes, and discharge summaries were most-frequently viewed. Most (67%) notes were viewed after discharge.

Despite high portal activation rates, few hospitalization notes were viewed. Significant disparities exist in portal access and viewing notes. Further work is needed to overcome barriers to accessing pediatric medical information.