Access to notes allows families to manage health care that often happens across health systems, and helps children learn to be more engaged in their own health. You’ll find information here for health systems and health care professionals.
Pediatrics & Adolescents Toolkit
Why use OpenNotes for Pediatric and Adolescent Medicine?
Help Patients and Families Remember What Was Said at the Visit. OpenNotes provides parents, patients and care partners the ability to access medical information wherever and whenever they choose to remind themselves and their children what was discussed during an office visit. Studies suggest that patients and families often forget what was said during a medical encounter. Reviewing the record and the notes can help make sure that everyone understands the treatment plan and next steps.
“My husband calls me the Chief Operating Officer of our family. With three kids, each with different schedules and different health concerns, access to the notes is a tremendously valuable tool to help me manage our health.”— Betsy
Communicate Concerns. Reviewing the notes gives parents, patients and care partners an opportunity to identify possible inaccuracies, such as medication changes, new allergies, family history updates, or other information that may be useful to clinicians. Reviewing the note may also prompt patients and families to let the care team know if the child or family doesn’t understand the care plan or is unable to follow the recommended next steps.
“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 healthcare.”— Bourgeois, et al, Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients, JAMIA, November 2008
Share Notes With Others Involved In Care. Schools often ask parents to fill out a health form at the beginning of each year. It can include a vaccination record or a description, for example, of how a child’s asthma is managed. Accessing the child’s medical record, including the clinical notes, can not only help with recalling important details, but it also allows the parent or care partner to share portions of the notes with the school nurse, another health specialist, or anyone they choose to give a more detailed and accurate description of a condition or treatment plan.
Help Adolescents Learn to Navigate the Health System. OpenNotes can help parents help their children, especially those with complex health concerns, feel empowered and more in control of their health care. Reading notes can also help patients and families develop skills to become more informed users of the health system going forward.
Which Health Systems Share Adolescent Notes as well as Pediatric Notes?
Many health systems share pediatric notes. The following systems share adolescent notes as well.
- Avera Health
- Boston Children’s Hospital
- Essentia Health
- Mercy Medical
- Peace Health Medical Group
- Saint Alphonsus Health System
- Sutter Health Medical Foundation
- UC Health
- University of Utah
- The Vancouver Clinic
“Our approach to sharing notes with adolescent patients was brought to us by our family physicians, who felt that we should not withhold portal access from these young people. Using our decision making standard ‘what is the best thing for the patient?,’ we felt that in this age group especially, digital tools were likely to be important in developing responsible engaged patients who partnered with their clinicians.”— Marcia J. Sparling, MD, Medical Director for Informatics, The Vancouver Clinic
FAQs for Clinicians
The questions and answers below were developed in partnership with Boston Children’s Hospital and may be adapted for use in other health systems.
Which clinics are participating in the OpenNotes initiative?
At Boston Children’s Hospital, most of the ambulatory clinics are sharing their notes through the MyChildren’s patient portal with the exception of a few clinics, including Psychiatry, Adolescent, GYN, Adolescent Substance Abuse Clinic and the Child Protection team.
Who can access the notes?
Boston Children’s Hospital allows both parents and patients (starting at age 13 years) who have MyChildren’s portal accounts access to notes. Adolescents gain access at age 13 (based on statutes in Massachusetts, laws defining the types of health care services and minimum ages at which adolescents may independently seek those “confidential” services differ from state to state), and parents retain access to non-confidential parts of the patient’s record until age 18. If parents are appointed medical guardians for patients who are 18+ years of age, access to the patient’s record is continued after obtaining the appropriate court documents.
What if an adolescent discusses a confidential issue with me during the visit?
Boston Children’s Hospital has created “confidential” note types that are suppressed from the portal, which individual clinicians can elect to use for information they do not want the parent to access. You can choose to create 2 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 or simply create a single confidential note that will be completely suppressed.
How do I handle situations with suspected medical abuse/neglect in my notes?
At Boston Children’s Hospital any note can be flagged as confidential, or separate notes can be created with confidential information. However, as has always been the case, these notes do not carry any legal protections, and, even though these notes are suppressed from the portal, families can request these records from medical records. Do not hesitate to seek support if you are uncertain about how to document such sensitive information.
What happens in cases where parents are divorced and both share custody?
If both parents are legal guardians, they both have access to the patient portal at Boston Children’s Hospital. However, we are very cognizant of the fact that a parent may share information with a clinician with the expectation of confidentiality and would not want this information to be shared with the other parent or the patient. We ask our clinicians to consider this information also as sensitive/confidential, even though this information would not be suppressed if they requested a copy of the official medical record.
What happens if the patient is in Division of Children, Youth and Families (DCYF) custody?
If the biological parents have lost custody of the patient, Boston Children’s Hospital will disconnect the parent accounts, so they will no longer have access to any notes. The DCYF social worker can apply for an account. If the proper court documents are provided to our support team, access is granted to the social worker.
How do patients and families know when a note is available in the portal?
Boston Children’s Hospital has created an alert via secure messaging that lets patients and families know when a note has been signed by the attending and is available for review.
What kind of feedback are we requesting from the patients and parents?
Boston Children’s Hospital is participating in the OpenNotes patient reporting tool. The reporting tool invites patients and families to review their notes and submit a short feedback form if they find any potential note inaccuracies, do not understand or are unable to follow the care plan, are concerned about diagnostic tests or study results, or have other feedback about their note. More information about the OpenNotes patient reporting tool can be found here.