Work

Parent Experiences Accessing Inpatient Clinical Notes on a Pediatric Oncology Service

Year: 2026

Type: article

Abstract: BACKGROUND: Despite the 21st Century Cures Act mandating open access to clinical notes, parent engagement remains low, with less than 10% accessing notes during their child's hospitalization at our children's hospital across all services. Parents play a critical role in patient safety but often experience challenges staying informed due to limited access to written clinical information. OBJECTIVE: Evaluate parent access to and experiences with clinical notes using a bedside tablet during their child's oncology hospitalization. METHODS: In this mixed methods study, parents of children younger than 12 years admitted to an oncology service from August 2022 to June 2023 received real-time note access via a 4-digit login to the patient portal application on a bedside tablet. Note access was electronically tracked. Parent experiences were assessed using OpenNotes survey items and semistructured interviews analyzed using conventional content analysis. RESULTS: All 25 parents accessed at least 1 note, with a mean of 31 notes per parent (range: 1-134). Of 1599 notes written, 1594 (99.7%) were shared to the portal, and 781 (49.0%) were accessed. Most parents found notes understandable (92%) and useful for tracking daily plans and discharge goals (80%). Five parents (20%) identified possible inaccuracies; 60% were confirmed safety concerns (eg, medication error). Note access increased parent self-efficacy in understanding their child's care, evoked a spectrum of emotions, and required management of complex medical information. CONCLUSION: Although most parents found notes beneficial, efforts are needed to support parent navigation of complex information and systematically address parent-identified safety concerns.

Source: Hospital Pediatrics

DOI: 10.1542/hpeds.2025-008530