Abstract
Objective Our objective is to describe the implications, anticipated and perceived, by providers
in a level-IV neonatal intensive care unit (NICU) with immediate patient access to
inpatient notes and test results in the wake of the 21st Century Cures Act (CCA).
Study Design Using a mixed-method approach in February 2021, a preimplementation survey of neonatologists,
neonatal fellows, nurse practitioners, and neonatal nurses reported their perspectives
on the new 21st CCA and how they anticipated that it would change their practices,
and the experience of families in the NICU. In the follow-up to implementation, a
postsurvey was completed by staff reporting their experiences in July 2021. Thematic
analysis was performed.
Results In the preimplementation 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 the context provided by the care team and be overwhelmed by
the amount of information available. In the postimplementation survey, staff reported
that the Act had less impact on their practice than they had anticipated preimplementation.
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 CCA.
Key Points
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The impact of the 21 CCA on the NICU has not been studied.
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NICU staff have significant concerns related to the release of results to families.
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This study highlights the need to set expectations and provide family-centered care.
Keywords
electronic health information - neonatal intensive care unit - family-centered care
- pediatrics
