Skip to Main Content
Skip Nav Destination

What Parents Say About Access to Open Notes in a Pediatric Intensive Care Unit

April 9, 2024

Editor’s Note: Beth Dworetzky's son was born with a complex heart condition. She and her son navigated a fragmented health care system for 31 years until his death in October 2021. -Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics

Family Connections with Pediatrics

The 21st Century Cures Act makes it easy for patients and families to read their health providers’ clinical notes (also called open notes) that summarize visits.

This month’s Pediatrics includes an article titled "Open Notes Experiences of Parents in the Pediatric Intensive Care Unit" (10.1542/peds.2023-064919) to learn if parents found access to open notes during their child’s intensive care unit (ICU) stay helpful.

How did the authors study this?

The authors did phone interviews with 20 parents whose children had been in the ICU, at a single hospital, for at least two days. The parents’ responses were grouped into themes.

What did the authors find?

Access to open notes:

  • Helped families understand of their child’s condition and progress
  • Increased family satisfaction with care
  • Improved family emotional well-being
  • Helped families share information with their children’s primary care and other providers, as well as family and friends
  • Helped families feel like part of the care team

Other findings included:

  • Parents were upset that some notes were not the same as what providers told them
  • Many notes were not written using terms parents could understand
  • Some notes included language that parents found critical of their parenting, such as not spending enough time at their child’s bedside
  • Parents’ requests to correct errors in the open notes were not made and carried forward

What can you do with this article?

  1. Share the article with your child’s primary care provider.
  2. Ask the doctor, nurse, and other health providers to explain terms, test results, conditions, or procedures using words you can understand.
  3. Depending on your child’s age, let them know you are reading open notes about their care and ask them if they have questions for their providers.
  4. As your child is able, encourage them to read their open notes so they can talk with their providers, ask questions, and help make decisions about their own care.
  5. If you have ideas to improve access to and use of open notes in your hospital system, find out who to speak to. A patient and family advisory council or patient relations department can be a good first point of contact.
Close Modal

or Create an Account

Close Modal
Close Modal