Family Perception of OpenNotes in the Neonatal Intensive Care Unit

Abstract

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.

Keywords

clinical documentation and communications - notes - patient–provider - internet portal - neonatology - inpatient - intensive and critical care - 21st Century Cures Act

Protection of Human and Animal Subjects

The study was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects, and was reviewed by El Camino Health Institutional Review Board.

Publikationsverlauf

Eingereicht: 11. September 2023

Angenommen: 21. Dezember 2023

Accepted Manuscript online:
12. Januar 2024

Artikel online veröffentlicht:
28. Februar 2024

• References

• 1 Office of the National Coordinator for Health Information Technology. Department of Health and Human Services 21st Century Cures Act: Interoperability, information blocking, and the ONC health IT certification program Final rule. 85 Federal Register 25642–25961. 2020 . Codified at 45 CFR §170, 45 CFR §171. Accessed in March 8, 2023 at: https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification
• 2 Walker J, Leveille S, Bell S. et al. OpenNotes after 7 years: patient experiences with ongoing access to their clinicians' outpatient visit notes. J Med Internet Res 2019; 21 (05) e13876 [ Erratum in: J Med Internet Res 2020 Apr 30;22(4):e18639]
• 3 Sarabu C, Lee T, Hogan A, Pageler N. The value of OpenNotes for pediatric patients, their families and impact on the patient-physician relationship. Appl Clin Inform 2021; 12 (01) 76-81
• 4 Zellmer BM, Nacht CL, Coller RJ. et al. BedsideNotes: sharing physicians' notes with parents during hospitalization. Hosp Pediatr 2021; 11 (05) 503-508
• 5 Lou LJ, Carr MF, Lantos JD, Fanaroff JM, Mercurio MR. Balancing risks and benefits of open notes for neonatology. J Perinatol 2021; 41 (09) 2370-2371
• 6 Sullivan AHT, Healy HM, DeGrazia M, Toole C, Hansen A, Leeman KT. The 21st Century Cures Act: perspectives of clinicians in a level-IV neonatal intensive care unit. Am J Perinatol 2022; ( e-pub ahead of print). Doi:
• 7 American Academy of Pediatrics Committee on Fetus And Newborn. Levels of neonatal care. Pediatrics 2012; 130 (03) 587-597
• 8 Arvisais-Anhalt S, Lau M, Lehmann CU. et al. The 21st Century Cures Act and Multiuser Electronic Health Record Access: potential pitfalls of information release. J Med Internet Res 2022; 24 (02) e34085
• 9 Bourgeois FC, DesRoches CM, Bell SK. Ethical challenges raised by OpenNotes for pediatric and adolescent patients. Pediatrics 2018; 141 (06) E20172745
• 10 United States Census Bureau. Quick Facts. Santa Clara County, California. Accessed October 17, 2023 at: https://www.census.gov/quickfacts/fact/table/santaclaracountycalifornia/PST045222
• 11 Smith CA, Coller RJ, Dean SM. et al. Parent perspectives on pediatric inpatient OpenNotes. AMIA Annu Symp Proc 2020; 2019: 812-819
• 12 Kelly MM, Smith CA, Hoonakker PLT. et al. Stakeholder perspectives in anticipation of sharing physicians' notes with parents of hospitalized children. Acad Pediatr 2021; 21 (02) 259-264
• 13 Kelly MM, Hoonakker PLT, Nacht CL. et al. Parent perspectives on sharing pediatric hospitalization clinical notes. Pediatrics 2023; 151 (01) e2022057756