Am J Perinatol 2024; 41(04): 511-514
DOI: 10.1055/a-1948-7471
Short Communication

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

1   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
2   Harvard Medical School, Boston, Massachusetts
,
Helen M. Healy*
2   Harvard Medical School, Boston, Massachusetts
3   Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts
,
Michele DeGrazia
1   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
2   Harvard Medical School, Boston, Massachusetts
,
Cheryl Toole
1   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
,
Anne Hansen
1   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
2   Harvard Medical School, Boston, Massachusetts
,
Kristen T. Leeman
1   Division of Newborn Medicine, Boston Children's Hospital, Boston, Massachusetts
2   Harvard Medical School, Boston, Massachusetts
› Author Affiliations

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

  • The impact of the 21 CCA on the NICU has not been studied.

  • NICU staff have significant concerns related to the release of results to families.

  • This study highlights the need to set expectations and provide family-centered care.

* Contributed equally as co–first authors.


Supplementary Material



Publication History

Received: 08 May 2022

Accepted: 01 September 2022

Accepted Manuscript online:
21 September 2022

Article published online:
21 December 2022

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