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. Recent research examined which patients choose to share notes, and why they do so:

Study highlights:

• 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.

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.

Family caregivers and consumer health information technology | J Gen Intern Med (2015)

Read more research

Share online. Online access to health information lets care partners obtain what they need easily and quickly.

Offer formal shared (sometimes called “proxy”) access. A growing number of health systems invite patients to grant secure shared access to care partners. This access allows care partners to read notes, access test results, communicate with clinicians, schedule appointments, and request prescription refills. Shared access also provides clinicians with a clear understanding of who they are communicating with electronically and legitimizes care partner access to the recipient’s digital health information.

“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 Wolff, PhD, Johns Hopkins Bloomberg School of Public Health

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. In the future, a patient might authorize a formal or informal care partner to schedule appointments or refill prescribed medications. At the same time, they could choose to withhold access to some highly personal health information. Until privacy controls are more readily available, it is important that patients understand what those with proxy access to their records are and are not able to view.

Spread awareness. Making both patients and families aware of the benefits of reading notes may require outreach and marketing efforts by health systems and clinicians.

Shared access to patient portals for older adults: Implications for privacy and digital health equity | JMIR Aging (2022)

Patients and families as teachers: a mixed methods assessment of a collaborative learning model for medical error disclosure and prevention | BMJ Qual Saf (2016)

Read more research

Open notes help care partners navigate the health care system. Managing health care demands can be difficult. This is especially true for individuals with complex health needs who often see multiple health care professionals. Providing access to notes can help ensure that everyone on the care team, including the care partner, is on the same page with the care plan and goals of care. Sharing notes may also benefit care partners by streamlining the flow of information among the care team, patient, and care partner.

Open notes can create stronger patient-care partner therapeutic alliances.

Research indicates that sharing notes is overwhelmingly endorsed as beneficial by patients and those who care for them. Moreover, the benefits of open notes may be as powerful for care partners as for patients themselves, offering an invaluable tool for improving transparency, communication, and continuity of care.

Among patients and care partners who shared notes:

• 88% of patients and 86% of care partners said they had formulated better questions for the clinician.
• 86% of patients and 82% of care partners reported they had more productive discussions about the patient’s care.
• 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 understood relevant health conditions better, remembered the patient’s care plan more clearly, and felt more in control of care.
• 71% of both patient and care partners reported patients more often taking medications as prescribed.
• 33% of care partners accessed notes because they were not able to attend an appointment.
• Only 1 in 10 patients voiced concerns about privacy.

Open notes give care partners what they need. 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. And it is likely that easy access to information will decrease stress among care partners.

Open notes help bridge the gap for those with limited English or health literacy. Although information gained through patient portals offers many benefits, not all patients have access to computers or know how to navigate their health records online. In addition to helping care partners manage health activities, studies from Johns Hopkins suggest that shared access is an underutilized strategy for bridging the digital divide. Shared access can help patients with health and technological literacy deficits by providing access to another person who can help them navigate the patient portal.

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)

Read more research

The Coalition for Care Partners is a partnership among patients, care partners, clinicians, care delivery systems, health information technology vendors, and researchers. This effort is spearheaded by OpenNotes and the Johns Hopkins Roger C. Lipitz Center for Integrated Healthcare. You can find published research and active demonstration projects at CoalitionforCarePartners.org.