P3B408: Pediatric Perspectives on Opennotes from Inpatient, Outpatient, and Neonatal Intensive Care Families

Background: The 21st Century Cures Act has mandated sharing of clinical notes electronically to patients and their caregivers (“OpenNotes”). While OpenNotes has been studied extensively in the adult population, less is known about sharing notes in pediatrics. The objective of this study is to compare parent perceptions of accessing doctors’ notes based on results from prior surveys of patients from outpatient specialty clinics, an inpatient hospitalist service, and a neonatal intensive care unit (NICU).

Methods: This is a secondary analysis of survey data collected from three studies that assessed parent perceptions of accessing their child’s doctors’ notes via a patient portal (Epic® MyChart® or MyChart® Bedside). The first study was conducted with parents of children < 12 years old who accessed notes after a specialty clinic visit at a quaternary health care system. In the second study, 25 parents of children < 12 years old who were discharged from the hospitalist service at a tertiary-care children’s hospital were surveyed on notes accessed during their child’s hospitalization. Finally, a third study was conducted with parents who accessed notes during their child’s hospitalization at a community level 3 NICU. Surveys included items adapted from the adult OpenNotes literature. Results were compared using the chi-square test.

Results: Survey responses included 159 outpatient parents and 35 NICU parents (response rate 20% and 18%, respectively). All parents were satisfied with access to doctors’ notes (Figure 1). Parents reported that the doctors’ notes were easy to understand (outpatient 89%, NICU 91%, p=0.73) and helped them remember their child’s clinic visit or care plan (outpatient 91%, inpatient 100%, NICU 88%, p = 0.25). Concerning jargon in the notes, NICU parents reported more confusion (NICU 15%, inpatient 0%, p=0.044). Top reasons for reading the notes were similar: “To know about my child’s health” (outpatient 76%, NICU 100%) and “To understand what the doctor said” (outpatient 72%, NICU 83%). However, fewer NICU parents reported an increased sense of control with OpenNotes (inpatient 91%, NICU 79%, p=0.22). Parents felt the same or better about their child’s doctor with access to notes (outpatient 97%, NICU 100%, p=0.30). More NICU families reported that the notes were “Always accurate” (outpatient 50%, NICU 91%, p< 0.0001); however, more NICU families reported contacting the doctor about something in the notes (outpatient 15%, NICU 57%, p< 0.0001).

Conclusion: Parents in varying pediatric settings indicated positive perceptions of doctors’ notes, but there were some differences in parent response based on setting. Their responses give important insights into how to counsel parents in different settings about the information in OpenNotes -- for example, focusing on parents’ role in helping improve note accuracy in outpatient and inpatient settings, while working to reduce confusion surrounding jargon in the NICU.