Parent Perspectives on Sharing Clinical Notes

Editor Note: Danielle Gerber is the mother of a child with medical complexity and a Family Engagement Specialist at the Waisman Center in the University Center for Excellence in Developmental Disabilities at the University of Wisconsin Madison. -Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics

Blog: Family Connections with Pediatrics
Every relationship benefits from good communication, and that is especially true for the patient-doctor relationship. In today’s rushed world, there is not always enough time to talk about every detail of your child’s care during a visit or rounds.

But did you know that it is a federal law that hospitals provide patients and families with free, online access to their doctor’s clinical notes? Having access to this information comes with both benefits and challenges.

In this month’s Pediatrics, ‘Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes’, Kelly et al share findings of family experiences when they were given access to “notes” from the care team during their child’s hospital stay (10.1542/peds.2022-057756).

What is in the study?
The study included interviews of 28 families with children under 12 years of age receiving care in the hospital. After a family agreed to do the study, they received a tablet that allowed them to read ‘notes’ written by their child’s care team. Notes in this study were the admission and daily progress notes written by the medical team. At discharge from the hospital, authors asked families what they thought about having note access and their experience with the notes. The authors also asked for suggestions to make note sharing better.

What were the benefits of note sharing?
Families described 6 benefits of having access to notes:

1. Provides a recap of the “game plan” and goals of care
2. Improves knowledge about their child’s plan of care
3. Improves communication with the child’s care team, their child, and others who are not present
4. Helps the family to be a part of their child’s care team
5. Helps answer questions, so that the family does not have to rely on staff as much
6. Builds confidence in families and care team

What were the challenges of note sharing?
Families described 4 challenges:

1. Difficulty understanding some medical terms
2. Confusing communication with healthcare team when different information was in the notes versus in-person conversation
3. Problems with note content, such as incomplete or outdated information
4. Negative feelings, such as when the diagnosis was “bad” or unclear, or when medical terms were very confusing

It is important to note that families felt that the benefits of having the notes far outweighed the challenges, and all of the families wanted access to notes during future hospital stays.

What strategies can support note sharing?
Families laid out 4 suggestions for the medical team that would support note sharing:

1. Sample: Provide a sample note to outline how a note should be written
2. Time: Give families enough time to read and process the latest notes before rounds
3. Language: Avoid medical terms that are difficult to understand without more explanation
4. Resources: Share information about topics that might come up while reading a note, such as standard ranges for vital signs and lab values or a glossary of frequently used medical terms

What can I do with this information?

• If you are a parent or guardian, you have the right to access your child’s inpatient clinical notes (if your child is less than 12 years old). Use the information to empower yourself and advocate for your child. Recognize that while information is power, your child’s clinical notes may be hard to understand without a solid medical background. If you have any concerns or questions about what you read in your child’s hospital notes, talk to the medical team to make sure you are on the same page.
• If you are a doctor, be aware that your words matter. It is good practice to take care to report facts without bias. Take a look at a previous Family Connections with Pediatrics blog on the Pediatrics article, “The Weight of Our Words” for more ideas.