Open notes can help families and care partners manage care across health systems more effectively while teaching children to be more engaged with their health.
Open Notes for Pediatrics & Adolescents
How Families and Care Partners Can Use Open Notes
Manage your child’s health care. Open notes provide the ability to access your child’s visit notes wherever and whenever you want to remind yourself and your child what was discussed during an office visit. Reviewing the record and the notes can help make sure that everyone understands the treatment plan and is on the same page with the care team for next steps.
“Reading open notes can help people manage their health care and the care of others in a way that makes them feel more confident, prepared, and in control.”
Communicate concerns. Reviewing the notes is important for several reasons. Some families and care partners may help identify possible mistakes in the note, and can help improve note accuracy by sharing these with their health care team. It is also important to let the care team know if you and your child don’t understand the care plan, or are unable to follow the recommended next steps after reading the note.
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 your child’s medical record can not only help you recall important details, but it also allows you to share portions of the notes with the school nurse, another health specialist, or to anyone you choose to give a more detailed description of a condition or treatment plan.
Help children learn to navigate the health system. Open notes can help parents help their children, especially those with complex health concerns, feel empowered and more in control of their health. Reading notes can also help patients and families develop skills to become even more informed users of the health system going forward.
FAQs for Families & Caregivers
What is a note?
After a visit or any discussion with you and your child, the clinician writes a note summarizing the most important information discussed, such as details you or your child provide about symptoms, a description of the exam, an overview of lab results, and details about the treatment plan and next steps. All of this becomes a part of your child’s medical record.
Who is behind the OpenNotes movement?
OpenNotes is a not-for-profit international movement started in 2009 by health professionals at Beth Israel Deaconess Medical Center and Harvard Medical School in Boston, Massachusetts. It is supported entirely by grants from private foundations, gifts from donors, and federal research grants. OpenNotes does not develop or sell software or commercial products. Its staff includes doctors, nurses, mental health professionals, social scientists, and patients and their care partners. Those working with OpenNotes have two principal activities: They urge health care providers and systems to utilize notes to partner with patients and care partners efficiently and actively, and they study what happens as a result.
Where can I read my child’s notes?
Parents can access their child’s medical records using the health care system’s secure, patient website or portal or by requesting a paper copy. By creating a secure, online account on the web portal, parents and care partners can request appointments, communicate with the health care team and view portions of your child’s health record, including the notes, in systems that have open notes. Parents can sign into the portal – at their convenience – using an Internet enabled computer or smartphone. If the child’s doctor or nurse does not use a web portal, parents can ask for the notes to be printed.
How do open notes affect confidentiality and privacy?
All clinicians involved in your child’s care already have access to the information contained in the medical record. Doctors, nurses and all health care professionals operate under strict confidentiality rules, and open notes do not change that relationship, though parents and care partners can choose to share medical information with others involved in a child’s care. This collaborative approach ensures that patients and specialists are well-informed on treatments and progress, a vital consideration for patients with multiple specialists.
To help ensure your privacy, keep your login name and password private, and whenever you look at your child’s health record, always remember to sign out.
How is confidentiality affected when children become adolescents?
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. It’s important to discuss access to health information with your adolescent and the care team.
At Boston Children’s Hospital, for example, adolescents can create their own accounts to access their health information without parental consent, but cannot view secure messages sent between the parent/guardian and the health care team. Parents/guardians cannot view secure messages between the adolescent and the health care team, confidential appointments, or confidential health information. Confidential information may include: confidential laboratory results, confidential diagnostic studies reports, visit notes that may include confidential/sensitive information, and confidential problems and medications.
“We believe it’s important to allow parents access to their adolescent child’s non-confidential medical information, as many parents continue to play an important role in helping adolescents assume responsibility for their medical care guiding them through healthcare decisions.”
— Fabienne Bourgeois, MD, MPH, pediatric hospitalist and the Medical Director of Patient-Facing Applications at Boston Children’s Hospital.
What should I do if I can’t see any of my notes or a specific note I expected to see?
- The note may not be ready. After the clinician writes and approves the note electronically, the note will become available.
- You may need to request access. Your health system should have a request process in place, and you should get access to the notes within three days of making the request.
- If you have requested access to the notes, and you still cannot find them, you may need help navigating the portal. Try contacting your patient portal’s support team so they can help you find where the notes are located.
- If there is no request process or your request is denied or delayed, you may be experiencing information blocking. You can report information blocking here.
What if I have a question about something in the note?
Please keep in mind that the note is part of your medical record. Doctors and/or other clinicians use the note to manage your individual circumstances and to communicate efficiently with others involved in your care. You may find the note difficult to read because it includes unfamiliar abbreviations or terms. It’s okay to use trusted online resources to look information up or to contact your health care team if there’s something you don’t understand, if you are unable to follow the care plan, or if you are concerned about a diagnostic test, study results, or other aspects of your care.
What if I find an error or inaccuracy?
If you see an error or inaccuracy that could affect your child’s care, your care team will want to know. Never hesitate to call or send a secure message.
View a more comprehensive FAQ about reading your notes here.
We're funded by grants, philanthropy, and supporters like you. Your entire tax-deductible donation will go to spreading the OpenNotes movement.
