BALTIMORE, MD – 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. 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 relationship remains confidential, patients can share information in their medical record with whomever they 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.
Family Caregivers Are Among the Most Vigilant of Health System Stakeholders
Supporting appropriate and meaningful engagement of family members through shared access to the patient portal has several important benefits. 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.
How Patients and Caregivers Benefit from Note Sharing
- Greater than 85% of patients and care partners said they had better formulated questions for the doctor and more productive discussions about the patient’s care.
- 94% of patients and their care partners said they had a better understanding of patient health conditions, better remembered the patient’s care plan, and felt more in control of care.
- 71% of both patient and care partners reported patients taking medications as prescribed more often.
Work undertaken by me, colleagues at Geisinger Health System, and the OpenNotes team demonstrates the benefit of shared access. 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.
Why Patients Share Their Notes
- 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 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.
Ongoing and Future Work: Bridging Patients’ Preferences to Support Care Partners Information Access
Our team recently completed a trial of patient-family agenda setting, the “SAME Page” study funded by the National Institute on Aging (R21AG049967; NCT02986958; Jennifer L. Wolff, PI). We enrolled older primary care patients with cognitive impairment and the care partner who regularly attends visits with them. Nearly all patients (>95%) told our study team that they would like their care partner to have access to their electronic health information, but few (<5%) care partners had their own identity credentials through which they could access the patient’s portal account. With the support of the Susan G. Komen Foundation (NCT03283553) our study team in partnership with Antonio Wolff, MD, Komen Scholar and Professor of Oncology at Johns Hopkins, is extending this work to a different population of breast cancer patients on active treatment. In this new trial, we are eliciting and executing patients’ preferences for sharing access to their patient portal account and their doctor’s OpenNotes with their care partners. So far, the protocol is going smoothly. Patients and their care partners are actively engaging in conversations about patients information sharing preferences – and these preferences vary widely!
Taken together, these study results suggest that shared access is an underused strategy that may help caregivers better support patients. OpenNotes may also bridge patients’ health literacy deficits and lack of technology experience by allowing family members to participate more actively in care. In the long run, we expect these efforts to positively impact on the quality of decision-making and other meaningful measures of clinical outcome.
Jennifer L. Wolff, Ph.D., Professor of Health Policy and Management Johns Hopkins Bloomberg School of Public Health, is a gerontologist and health services researcher who studies family caregiving and optimal models of care delivery for adults with complex health needs.
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