Balancing risks and benefits of open notes for neonatology

Lou, Lily J.; Carr, Mark F.; Lantos, John D.; Fanaroff, Jonathan M.; Mercurio, Mark R.

doi:10.1038/s41372-021-01106-6

Cited by 4 publications

(3 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Medical notes and test results, sometimes sensitive in nature, are now immediately released and available throughout our hospital. 1,2 While this act aims to improve healthcare information transparency and patient empowerment, it presents unique challenges in pediatric medicine. Unlike in the adult setting, in which the patient is the primary recipient of health information, in pediatrics there is a surrogate decision maker, usually the child's parents.…”

Section: Introductionmentioning

confidence: 99%

“…3 Significant concerns also exist regarding preserving a birth parent's privacy in relation to their own health information that may be entered into their child's chart, as well as the partner's right to access that information. 2 To date, the impact of the 21CCA on clinicians and families in the NICU setting has not been studied. Given the potential changes in practice that the 21CCA may bring, the objective of our study was to explore clinicians' perceptions of the potential benefits and burdens of the 21CCA in the NICU setting.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The 21st Century Cures Act: Perspectives of Clinicians in a Level-IV Neonatal Intensive Care Unit

et al. 2022

View full text Add to dashboard Cite

Objective: To describe the implications, anticipated and perceived, by providers and in a Level IV neonatal intensive care unit (NICU) of immediate patient access to inpatient notes and test results in the wake of the 21st Century Cures Act. Study Design: Using a mixed-method approach in February 2021, a pre-implementation survey of neonatologists, neonatal fellows, nurse practitioners, and neonatal nurses reported their perspectives on the new 21st Century Cures Act and how they anticipated it would change their practice, and the experience of families in the NICU. In follow-up to implementation, a post-survey was completed by staff reporting their experiences in July 2021. Thematic analysis was performed. Results: In the pre-implementation survey, staff reported the greatest perceived benefits of the changes to be an increase in families’ ability to be part of the care team and prepare questions, and faster discussion of results by the care team. Also, staff’s highest concerns were that family members may incorrectly interpret results delivered electronically without context provided by the care team and be overwhelmed by the amount of information available. In the post-implementation survey, staff reported the Act had less impact on their practice than they had anticipated pre-implementation. Conclusion: To maximize benefits and limit burdens to families and staff, care teams should consider a thoughtful approach to information sharing with family members in compliance with the 21st Century Cures Act.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The 21st Century Cures Act: Perspectives of Clinicians in a Level-IV Neonatal Intensive Care Unit

et al. 2022

View full text Add to dashboard Cite

show abstract

“…Leaders in neonatology have stated that, "Access and input from the most invested parties in a baby's life is typically healthy," but have also acknowledged that transparency should be balanced with careful privacy consideration of the release of the birth parent's health information within the babies' records. 5 One NICU has assessed the impact of compliance with the Cures Act, especially test result release, on clinicians in the NICU. 6 However, the literature does not include, to the authors' knowledge, any description of families' experience with OpenNotes in the NICU.…”

mentioning

confidence: 99%

Family Perception of OpenNotes in the Neonatal Intensive Care Unit

McCallie,

Balasundaram,

Sarabu

2024

Appl Clin Inform

View full text Add to dashboard Cite

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. Objective: 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 3/16/22-3/16/23, there were 59 respondents (13%). Race was primarily Asian (48%), and English was the predominant language (93%). Most families indicated 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.

show abstract