"Open Notes" in Pediatric Acute Care Cardiology: Caregiver and Provider Experiences in a Single Center.

Abstract

Objective: To identify the utilization of shared medical notes, referred to as "open notes," and the experience of caregivers and cardiology providers during inpatient hospitalization for congenital heart disease.

Study design: Single-center, cross-sectional, survey-based study utilizing convenience sampling of patient caregivers on a pediatric acute care cardiology unit and corresponding cardiology providers. Surveys assessed demographic information, health literacy of caregivers, and experiences during inpatient hospitalization that relate to open note use. Descriptive statistics were performed.

Results: Forty-five caregivers (47% of eligible) and 21 cardiology providers (100% of eligible) were enrolled. There were no demographic differences between caregivers, or their children, who were open notes vs nonopen notes users (P > .05). Most caregivers were aware that the notes were available (87%), yet fewer enrolled in the program to read them (71%). Most caregivers had positive experiences with the notes (85%), while cardiology providers' opinions were overall neutral or negative (65%). Cardiology providers' suggestions for improvement of open notes were frequently infeasible based on regulations required by the 21st Century Cures Act.

Conclusions: Open notes in inpatient subspecialty pediatrics yields a novel opportunity for caregivers to engage positively and actively with the care team. Cardiology providers may value how positively caregivers view open notes as a method of receiving medical information and interacting with the care team. Cardiology providers may also benefit from further education on the new legislation in the 21st Century Cures Act.