ResourceEverything pediatricians need to know about open notes.
Access to notes allows families to manage care across various organizations. It helps children and adolescents become more engaged in their own health.
Fabienne Bourgois, MD, MPH
Benefits for using open notes with families and children
Communicating concerns. Reviewing notes gives parents, patients, and care partners an opportunity to identify possible inaccuracies, such as details about medication changes, new allergies, family history, or other information that may be useful to clinicians.
Remembering what was said during the visit. There’s ample evidence that patients and families often forget what was said during a medical encounter. Reviewing the record and the notes can help everyone understand the treatment plan and next steps.
Sharing notes. Schools often ask parents to fill out a health form at the beginning of each year. It might include a vaccination record or a description of how a child’s asthma is managed. Accessing the child’s medical record, including the visit notes, can help with recall of important details.
Learning to navigate the health system. Open notes can help parents empower their children to feel more in control of their health care, especially if they have complex health issues. Reading notes can also help patients and families develop skills to become more informed users of health systems in the future.
“My husband calls me the ‘Chief Operating Officer’ of our family. With three kids, each with different schedules and different health concerns, access to notes is a tremendously valuable tool to help us manage our health.”
— Betsy Lowe, parent
Using open notes with adolescents
Reading visit notes is an important skill for an adolescent.
Here are a few best practices:
When appropriate, encourage parents to review notes with the adolescent.
Encourage discussion about notes.
Make sure the note is available in a timely fashion.
Incorporate and address patient and parent concerns in the notes.
Encourage adolescents to speak up if they notice a mistake or inaccuracy in the note, or if the note doesn’t reflect what the adolescent remembers discussing during the visit.
Acknowledge discrepancies, inaccuracies, and mistakes and update the note as appropriate.
Reading notes helps them:
Learn self-care related to their health issues as they transition to adulthood
Feel more informed about their care
Remember their care plan
Understand better how you are thinking about their diagnosis
Make decisions about their care
Feel more active and engaged in their health care
Understand why a test was done and what the result means
Feel more prepared for their next visit
Feel greater goal alignment, trust, and a sense of teamwork with their clinicians
“Shared, ubiquitous, consent-modulated access to medical information promises reduced medical errors, improved efficiency, and safety of medical care, and lower health care costs, as well as activated patients who take responsibility and become partners in managing their own health care.”
— Fabienne Bourgeois MD, MPH, et al. “Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients.” JAMIA, 2008
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It depends on your state’s laws and your patient portal access policies. Parents typically can access visit notes for their minor children, though some organizations limit access to notes for parents once the child becomes an adolescent. Adolescents can also have access to their own notes. They may independently seek “confidential” services, typically related to reproductive health, mental health, and substance use. Notes from these visits cannot be shared with a parent. Laws defining these types of health care services differ from state to state. If appointed as a medical guardian for patients age 18 or older, parents retain access to the patient’s record after obtaining the appropriate court documents.
OpenNotes: Sharing visit notes with patients and families | Pediatric Nursing (2018)
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Most often they both have access to the patient portal. However, a parent may choose to share information privately with a health care professional and request confidentiality from the other parent or the patient. In these cases, clinicians are asked to consider this information sensitive and/or confidential. Such information, however, may not be suppressed in response to formal requests for a copy of the official medical record.
Ethical challenges raised by OpenNotes for pediatric and adolescent patients | Pediatrics (2018)
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If the biological parents have lost custody of the patient, then most likely they will not have access to the child’s account. Some social workers working for certified agencies can register for a patient portal account as the legal guardian. If proper court documents are provided, access can be granted.
Ethical challenges raised by OpenNotes for pediatric and adolescent patients | Pediatrics (2018)
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Transition planning. Open notes can be a useful tool to help adolescents understand their health issues and become more engaged in their health care decisions and management. The notes can be incorporated as part of transition readiness, planning, and transfer to adult care.
Attitudes, experiences, and safety behaviors of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care | Future Healthc J (2021)
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Ideally, you can use confidential notes. For example, some health systems have created “confidential” note types that are hidden from the patient portal. Individual clinicians can elect to use this feature for information they do not want parents to access. They can also choose to create two notes (a note with only the confidential information, and one with general information), so that the parent/patient can access some pertinent information, i.e., the care plan. Alternatively, clinicians may create a single confidential note that will be completely suppressed from the patient portal.
Preserving privacy for pediatric patients and families: Use of confidential note types in pediatric ambulatory care | J Am Med Inform Assoc (2020)