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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Family Perception of OpenNotes in the Neonatal Intensive Care Unit
Katherine R McCallie1,2, Malathi Balasundaram1,2, Chethan Sarabu3
1Division of Neonatal and Developmental Medicine, Stanford University School of Medicine, Palo Alto, California, United States.
Insights
Most Neonatal Intensive Care Unit (NICU) families found shared medical notes easy to understand and felt more positive about their doctors. Some families suggested improvements for these OpenNotes.
Area of Science:
- Neonatal Intensive Care Unit (NICU) patient care
- Patient portal utilization
- Healthcare communication
Background:
- OpenNotes, sharing medical notes via patient portals, is understudied in pediatric and inpatient settings.
- Research on OpenNotes in Neonatal Intensive Care Units (NICUs) is particularly limited.
Purpose of the Study:
- To assess family interaction with and perception of inpatient hospital notes shared via patient portal.
- To understand patient experiences in a community Neonatal Intensive Care Unit (NICU).
Main Methods:
- An anonymous survey on OpenNotes was offered to families at NICU discharge.
- Survey completion occurred via the patient portal before discharge.
Main Results:
- 13% of families (59 respondents) participated.
- 93% found notes easy to understand; 73% felt better about doctors after reading notes.
- 53% contacted physicians about note content; 16% found notes confusing.
Conclusions:
- This is the first study on NICU families' perceptions of OpenNotes.
- Findings indicate positive family interactions with daily progress notes.
- Families provided valuable suggestions for improving OpenNotes in the NICU setting.
Background:
OpenNotes, or sharing of medical notes via a patient portal, has been studied extensively in the adult population, but less in pediatric populations, and even more rarely in inpatient pediatric or intensive care settings.
Objectives:
This study aimed to understand families' interaction with and perception of inpatient hospital notes shared via patient portal in a community Neonatal Intensive Care Unit (NICU).
Methods:
At the end of the NICU discharge education, completed in the patient portal before discharge, families were offered an anonymous survey on OpenNotes.
Results:
Out of 446 NICU patients from March 16, 2022 to March 16, 2023, there were 59 respondents (13%). Race was primarily Asian (48%), and English was the predominant language (93%). Most families indicated that the notes were "very or somewhat easy to understand" (93%). Seventy-three percent of respondents felt much better about the doctor(s) after reading the notes, and 53% contacted the physicians about something in the notes. Six (16%) felt that OpenNotes were more confusing than helpful.
Conclusion:
To the authors' knowledge, this is the first study on NICU families' perceptions of OpenNotes, which indicated positive interactions with the doctors' daily progress notes and gave important suggestions for improvement.
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