Care Partners

Care Partner Toolkit

The Growing Need for Care Partners

Family and friends often play a pivotal role as caregivers or care partners, managing the health needs of those who are more vulnerable, including organizing medical appointments and tasks and communicating with health care professionals. The need for clinicians to engage more effectively with these individuals has been well documented by the AARP, the New York Times and a recent National Academies of Sciences, Engineering and Medicine (NASEM) report, Families Caring for an Aging American. Fully transparent, online patient portals that include your notes can help both patients and their care partners enormously in accessing health information and participating more actively in care.

In a recent large survey of patients who read their medical notes using online patient portals, almost 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.

Care Partners and Online Patient Portals JAMA (2014)

Family Caregivers and Consumer Health Information Technology Journal of General Internal Medicine (2015)

Patients, care partners, and shared access to the patient portal: online practices at an integrated health system Journal of the American Medical Informatics Association (2016)

Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead Annals of Internal Medicine (2012)

Considerations for Sharing Notes With Care Partners

Share online or on paper. While online access lets care partners obtain information easily when they need it, printing and mailing notes can be highly effective for those without computer access.

Offer formal proxy access. A growing number of health systems invite patients to grant care partners secure proxy access, enabling them to read notes, access test results, communicate electronically with clinicians, schedule appointments, or request prescription refills.

“As consumer health information technology becomes more 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 will 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 could set preferences for what they want to share with their care partner. Such granular control over privacy is now technically feasible, yet rarely available. In the future, for example, a patient might authorize a paid attendant or informal care partner to schedule appointments or refill prescribed medications, while electing to withhold access to some highly personal health information.

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

How Do Caregivers Benefit From Access to Notes?

The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives patients the right to access their own medical records and permits sharing this health information with involved family members, friends, or professional caregivers. As of April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes with patients at no charge. This is required as part of the 21st Century Cures Act program rule on Interoperability, Information Blocking & ONC Health IT Certification.

Research indicates that such practice 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. By generating more productive discussions and greater agreement about care plans, open notes can also create stronger patient-care partner therapeutic alliances.

Study highlights:

88% of patients, and 86% of care partners said they had formulated better questions for the doctor.
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 taking medications as prescribed more often.
33% of care partners accessed notes because they were not able to attend an appointment.
Only one in ten patients voiced concerns about privacy.

Giving 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 stress and morbidity among care partners themselves may decrease.

Navigating the health system. Managing health care demands can be difficult, particularly 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 goals of care. Sharing notes may also benefit care partners by streamlining the flow of information among the care team, patient, and care partner.

Bridging the gap for those with limited English or health literacy. Although access to information through patient portals brings many benefits, not every patient has a computer, and not everyone with a computer knows how to access and use information in the health record. In addition to helping care partners manage health activities, studies from Johns Hopkins suggest that shared access is an underused strategy that may help patients bridge health literacy deficits and lack of experience with technologies.