Caregiver Proxy Patient Portal Access Leaves Much to Be Desired

New research published in JAMA Network Open is showing that the patient portal isn’t exactly set up for caregiver engagement and use. Caregivers are certainly using the portal, the data showed, but password-sharing is rampant, and it’s calling into question patient privacy and best practices for proxy patient portal adoption.

Patient portals aren’t always just for patients. With kids managing their health with their parents or guardians and more and more seniors tapping their adult children or professional caregivers as they age, the patient portal isn’t just about the patient at the center of care.

Proxy patient portals are caregiver-facing tools that are tethered to a designee’s patient portal and EHR. These technologies are best suited for parents or guardians of adolescent patients or those caring for an aging or ailing family member.

Through a literature review of 41 studies published between February and March of 2022, the researchers found that most caregivers are, in fact, using the patient portal. Most of the articles included in the review and which measured caregiver patient portal use found that more than a third of caregivers are utilizing the health IT.

That’s a good sign, the researchers said, because caregiver patient portal use comes with many benefits, including better communication, higher patient satisfaction, agreement about treatments, and a better understanding of care management.

More specifically, the review showed that when caregivers use the patient portal, there’s better caregiver insight into patient health, better caregiver activation, stronger continuity of care, and greater convenience.

But not a lot of caregivers actually have their own patient portal accounts, the data showed, with most studies measuring that proportion finding that fewer than 3 percent of caregivers have a designated proxy account. Those that did have a proxy account were more likely to be female, have a family relationship with the patient, and have better health literacy.

In fairness, the researchers acknowledged that many healthcare organizations allow patients to share their login credentials with authorized caregivers.

“Many health systems allow patients to authorize a family member or trusted friend shared access to their patient portal account using the designee’s own identity credentials,” the research team wrote.

Those regulations may be due to the outsized benefits of caregiver engagement.

But the researchers emphasized that password-sharing has its risks.

“Sharing credentials can lead to data security and privacy problems by revealing more information than desired by the patient and contribute to confusion and mistakes when clinicians do not know with whom they are interacting electronically or when legal documents submitted through the patient portal by someone other than the patient must be retracted,” they explained.

This is particularly troublesome for adolescent patients who are working on building their own autonomy. Adolescents may also participate in certain behaviors they do not wish to share with their parents or guardians but which could be essential to their health and well-being. Allowing tiered access through a proxy patient portal, not shared access through the adolescent’s patient portal password, may be crucial.

Healthcare organizations could do more to improve adoption of patient portal proxy accounts, which patients reported in several reviewed articles they’d prefer. The literature review showed that few healthcare organizations actually offer these proxy accounts, or else they limit proxy accounts to just one account per patient.

Moreover, healthcare organizations may consider ways to engage both patients and their caregivers in patient portal uptake, creating patient education systems to help those with limited digital health literacy.

“Organizations tasked with motivating care quality, such as the Joint Commission and the Office of the National Coordinator for Health Information Technology, must drive transparency and accountability in health systems’ reporting on shared access uptake and ways they promote functionality for user-friendly shared access, particularly for subgroups in which care partners play a large role in care management,” the researchers added in conclusion.