Editor’s Note: Abby Temple (she/her/hers) is a first-year resident physician in the Boston Combined Residency Program. She is interested in the integration of advocacy and health equity research into undergraduate medical education. Abby is interested in pursuing a fellowship specializing in gastroenterology or critical care. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics
In April 2021, the 21st Century Cures Act was implemented, allowing unprecedented patient and family access to electronic health records (EHRs). Like most advances in society, this change has come with many advantages and pitfalls for both patients/families and providers, and there remains much room for improvement.
In an article being early released in Pediatrics, Dr. Selby Chu, Dr. Bryan Sisk, and colleagues from the University of Texas Southwestern Medical Center and Washington University School of Medicine examine the impacts of open access to clinical notes (“open notes”) on the experience of parents during their child’s admission to the pediatric intensive care unit (10.1542/peds.2023-064919).
In this qualitative study, the authors found that every parent interviewed found some benefit to having access to the clinical notes during their child’s admission. Families found that open notes made it easier to:
- Coordinate care
- Confirm the information shared verbally earlier in the day
- Share information with other stakeholders
- Refer back to after verbal conversations with the care team.
Negative consequences were also observed, and these included:
- Feeling overwhelmed because they could not understand medical jargon used in the notes
- Feeling the need to be hypervigilant because of documented errors
- Uncertainty around how to correct or confront the care team when errors were noticed
- Increased psychosocial burden on parents when they read language that they perceived to be stigmatizing in the notes.
Parents also noted many areas for improvement regarding EHR interface and accessibility, including:
- Haphazard organization that made it difficult to find specific notes
- Unilateral design of the EHR, meaning that parents were unable to provide feedback on notes with incorrect information.
Overall, the authors emphasize that while open notes are beneficial to families with children admitted in critical condition, many areas of improvement remain. When they asked parents for suggestions of improvement, they received suggestions such as:
- Adding disclaimers for potentially triggering content
- Adding areas for parents to provide feedback and input
- An audit trail linking primary team and consultant notes
- Adding a distinct summary page.
Looking forward, it is possible that artificial intelligence could provide some utility in facilitating these changes. Until then, this article illuminates some ways that we can be more mindful about providing helpful and not harmful information when we write our notes in the critical care settings.
