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Balancing risks and benefits of open notes for neonatology

Journal of Perinatology volume 41, pages 2370–2371 (2021)Cite this article

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On April 5, 2021, the 21st Century CURES Act (https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification) went live with an “Open Notes” policy that patient health information would be released without barriers. This means that health care notes, labs and other such information will be released immediately, and without charge, for access by patients and of course their family, including decision-makers. In general, transparency in neonatology is a good idea. Access and input from the most invested parties in a baby’s life is typically healthy. The necessary inclusion of information about the mother’s health should prompt additional consideration as this new practice establishes itself.

The dilemma involves balancing a mother’s privacy regarding her own health information and a partner’s right to access health information about the child. Many of us believe that there is a risk for conflict between parents that may put mothers at risk for domestic violence over such issues as paternity, STIs, substance use, etc. At the same time, we believe that fathers advocate best for their babies if they have full information available to them. In fact, some of this information (i.e., STI history) may have implications for the father’s own health. Our experience tells us that information privacy is not top-of-mind when mothers come in for delivery. Instead, their attention is appropriately focused on labor progression, pain management, route of delivery and the health of their newborn. We also understand that it is not uncommon for deeply abused women to give consent in one form or another to their abusers.

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Authors and Affiliations

  1. Pediatrics/Neonatology, University of Illinois at Chicago, Chicago, IL, USA

    Lily J. Lou

  2. Bioethics, Providence Health-Alaska Region, Anchorage, AK, USA

    Mark F. Carr

  3. Pediatrics, University of Missouri-Kansas City School of Medicine; Children’s Mercy Bioethics Center, Kansas, MO, USA

    John D. Lantos

  4. Pediatrics/Neonatology, Case Western Reserve University School of Medicine; Rainbow Center for Pediatric Ethics, Cleveland, OH, USA

    Jonathan M. Fanaroff

  5. Pediatrics/Neonatology, Yale University School of Medicine, New Haven, CT, USA

    Mark R. Mercurio

Authors
  1. Lily J. Lou
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  2. Mark F. Carr
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  3. John D. Lantos
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  4. Jonathan M. Fanaroff
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  5. Mark R. Mercurio
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Correspondence to Lily J. Lou.

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Lou, L.J., Carr, M.F., Lantos, J.D. et al. Balancing risks and benefits of open notes for neonatology. J Perinatol 41, 2370–2371 (2021). https://doi.org/10.1038/s41372-021-01106-6

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