Sharing Access to Notes Engages and Empowers Patients, Families and other Care Partners

August 9, 2016 Reply


Jennifer L. Wolff, PhD,
Associate Professor of Health Policy and Management Johns Hopkins Bloomberg School of Public Health


Navigating health system demands and managing treatments can be difficult, particularly for individuals with complex health needs who are often under the care of multiple providers.  Online patient portals have become an important strategy that can be used to help patients access their health information and participate more actively in care.

Using the portal, patients can view laboratory test results and increasingly, the notes their doctors write. Patients can perform health management activities like filling prescriptions or scheduling appointments, and they can also communicate with their health care team using secure email. Although there are many benefits of having easy access to information using patient portals, not everyone has a computer or mobile device, and not everyone who has a computer knows how to access and use their record to help them manage their health.

Family and friends often play a pivotal role in managing the care of those who are more vulnerable, including helping manage medical tasks and communicating with health care providers. While the doctor patient relationships remains confidential, patients can share information in their medical record with whomever they like choose. Some health systems even allow patients to designate a family member or friend “care partner” with secure proxy access which enables them to access the patient’s health information, schedule appointments, refill prescriptions, or communicate electronically with providers.

Affording appropriate and meaningful engagement of family members through shared access to the patient portal has several important benefits.  Family members are among the most vigilant of health system stakeholders. Providing them timely access to accurate and comprehensive information about patients’ health and treatments can help families proactively support patients in managing their health and coordinating their care. Having care partners review the record also provides the opportunity to alert providers of inaccuracies or omissions in the patient’s electronic health record, enhancing patient safety. These benefits may be particularly important when family members live at a distance and cannot be physically present during face-to-face encounters.

Work undertaken by myself, colleagues at Geisinger Health System, and the OpenNotes team demonstrate the benefit of shared access. In a recent article in the Journal of the American Medical Informatics Association, we found that patients of all ages elected to share access to their patient portal account. Reflecting the diverse circumstances and multifaceted ways in which family members facilitate care, patients had varied motivations for sharing access to their patient portal account. Some patients stated they shared access to their patient portal account because their care partner helps them manage health care activities (41.9%). Other patients shared access to their patient portal account with a care partner in case of emergency (29.7%), because they themselves do not use a computer (18.4%), or because shared access was requested by their care partner (10.0%). Care partners were comparatively better educated, more confident in their ability to manage aspects of patient health, and more frequent users of health information technology than patients. Relative to patients, care partners were more likely to perform health management activities electronically and to use features of patient portal functionality such as direct messaging.

Taken together, study results suggest that shared access is an underused strategy that may help bridge patients’ health literacy deficits and lack of technology experience by allowing family members to participate more actively in care.

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