ResourceOpen notes help care partners and patients.
Do you help a patient, friend, or family member with their care? Open notes are a valuable resource for those who help in managing the care of others, whether they are nearby or at a distance.
Liz Salmi, patient advocate, with her mother, Sandy
Over 40 million Americans serve as “care partners.” Care partners are family, friends, or others who help take care of a patient.
When people read their notes:
88% of patients and 86% of care partners said they were able to prepare better questions for the doctor
85% of patients and 79% of care partners stated they were more likely to agree about the patient’s treatment plan
94% of patients and their care partners said they had a greater understanding of health conditions and that they better remembered the patient’s care plan and felt more in control
71% of both patients and care partners reported patients more often taking medications as prescribed
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Dealing with the health care system can be challenging. Family and friends play vital roles as caregivers or care partners who help “interpret” the experience of health care. They advocate for patients and help them manage their health care. Care partners organize medical appointments and tasks. They can improve communication between the patient and the care team. They can experience great stress.
Care partners co-manage care in many different ways. They may arrange or schedule services, join patients in visits, or provide emotional support. They may participate in making important decisions about care. Care partners are often family members, but may also be neighbors, friends, or others with a close relationship. Care partners may or may not be involved in providing hands-on assistance with daily activities.
Open notes can be a critical resource for care partners. Family and friends frequently play a pivotal role as care partners. In a large survey of patients who read their medical notes using online patient portals, nearly 40% reported sharing their notes with someone outside of the formal health care system. The need for clinicians to engage more effectively with care partners has been well documented. The report, Families Caring for an Aging American, from the National Academies of Sciences, Engineering, and Medicine (NASEM), underscores this issue.
Care partners reading patients’ visit notes via patient portals: Characteristics and perceptions | Patient Educ Couns (2022)
Family caregivers and consumer health information technology J Gen Intern Med (2015)
Patients of all ages share access to their patient portal account.
42% say they share access because their care partner helps them manage health care activities.
30% say they share access with a care partner in case of emergency.
18% say they share access because they themselves do not use a computer.
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Family and other care partners are among the most vigilant of health system stakeholders. Work led by Jennifer Wolff, PhD, at the Johns Hopkins Bloomberg School of Public Health, demonstrates the benefit of shared access to notes.
Wolff found the benefits of open notes reported by care partners were comparable to those noted by patients themselves. Open notes appear to offer an invaluable tool for improving communication and continuity of care, while making the patient-care partner therapeutic alliance stronger through more productive discussion and greater agreement about plans for care.
Family members and care partners are among the most vigilant of health system stakeholders. Providing them timely access to accurate and comprehensive information can enable families to support patients proactively in managing health and coordinating care. Easy access to information is likely to decrease stress among care partners.
A randomized intervention involving family to improve communication in breast cancer care NPJ Breast Cancer (2021)
Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records J Am Med Inform Assoc (2017)
Patients, care partners, and shared access to the patient portal: Online practices at an integrated health system J Am Med Inform Assoc (2016)
Care partners access notes for many reasons.
33% of care partners access notes because they are unable to attend an appointment.
86% of patients and 82% of care partners had more productive discussions about the patient’s care.
“Now that consumer health information technology has become mainstream, the ability of clinicians to differentiate the identity of who—the patient or an involved family member or friend—is exchanging secure email messages, refilling medications, and viewing patient health information has become increasingly important in the delivery of safe and clinically appropriate care.”
—Jennifer L. Wolff, PhD, Johns Hopkins Bloomberg School of Public Health
Open notes help care partners
Navigate the health system. Managing health care demands can be difficult, especially for patients with complex health needs. Providing access to notes can help ensure that everyone on the care team, including the care partner, is on the same page.
Respond to a crisis. By having access to this health information, families and care partners can better support patients in managing their health, which can be especially helpful in emergencies.
Navigate language or technical barriers. When care partners have access to notes, they can help alleviate language barriers for patients who do not speak or are learning English. In addition, although there are many benefits from having easy access to information on patient portals, not everyone has a computer. And some patients with computers don’t know how to access and use their medical records.
Advocate for patient safety. Care partners can alert the health care team to errors in the patient’s health record or to missing information. These benefits may be more important when family members live at a distance and cannot be present during face-to-face encounters.
Open notes for parents
Most healthcare institutions or clinics have patient portals that provide access to your child’s health information, including the visit notes.
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All clinicians involved in your child’s care have access to the information contained in the medical record, including the notes. But doctors, nurses, and all health care professionals operate under strict rules guarding your family’s confidentiality. Open notes do not change those rules.
As a parent or legal guardian, you can choose to share medical information with others involved in your child’s care. This collaborative approach ensures that patients and specialists are well informed about treatments and progress.
To help ensure your family’s privacy, keep your patient portal login name and password private. Always remember to sign out whenever you look at your child’s health record.
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Laws dictating when adolescents are old enough to seek “confidential” health care services differ from state to state. Clinicians may have private conversations with an adolescent about sensitive or confidential topics and may choose to not share that information through the portal. It’s important to discuss access to health information with your adolescent and their care team.
For example, at Boston Children’s Hospital, adolescents can create their own accounts to access their health information without parental consent. However, they cannot view secure messages sent directly between the parent/guardian and the health care team.
Parents/guardians, on the other hand, cannot view:
Secure messages between the adolescent and the health care team.
Confidential appointments or confidential health information.
Parents/guardians will still be able to access all of their child’s non-confidential information. Confidential information may include: test results, reports, medications, and visit notes that include sensitive information.
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After a medical appointment, review the visit note together. Highlight what is important. Ask questions. Help them think about their own health. Encourage them to develop self-care skills. Ask them to look at when they are supposed to see that provider again. If you haven’t made the appointment, teach them how to make it. If your child asks a question about a change in their medication or are unsure of a step they were supposed to take, ask if they have checked the visit note. Have them look up that note and see if they can find the information they need.
Some institutions and clinics will limit parents’ access to an adolescent’s health information. This is because of state laws that restrict access to specific private or confidential adolescent information. Not all patient portals can separate confidential information from non-confidential information. Reach out to your care team or clinic to find out what their policies are.
If the policies do not allow you to have access to clinic notes, encourage your child to sign up for a patient portal once they’re eligible so they can access their notes. The age when patients under 18 can register for a portal account varies. Ask a member of your care team whether and how you can register for access to their account. Once your child turns 18 years old, your access to your child’s health information is usually discontinued. By law, they are now adults.
“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 and guiding them through healthcare decisions.”
—Fabienne Bourgeois, MD, MPH, Boston Children’s Hospital
Best practices for all care partners
Ask for notes online or on paper. Online patient portals let care partners easily access the information they need, when they need it. If you don’t have computer access, ask for the notes to be printed and mailed.
Ask for proxy (shared) access to the patient portal account. Some health systems allow patients to permit a care partner to have a secure log in of their own. This is often referred to as proxy, or “shared access” (not to be confused with healthcare proxies). This enables the care partner to access the patient’s health information.
Respect privacy. Ideally, patients should be able to set preferences for what they want to share with their care partner in the patient portal. However, such granular control over privacy is rarely available. Until privacy controls are more readily available, it is important that care partners help patients understand what those with proxy access to their records are and are not able to view.