Parent Experiences Accessing Inpatient Clinical Notes on a Pediatric Oncology Service

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.