Parents Viewing Teens’ Patient Portals Spur Talk of Proxy Accounts

More than half of adolescent patient portal accounts allow guardian proxy access, according to data published in JAMA Network Open, something the researchers said should be a consideration as organizations outline adolescent patient portal privacy items.

Managing the patient portal for a teenaged patient can be a challenging area for healthcare organizations. On the one hand, the teenager is technically still a child with a parent or legal guardian acting as that child’s healthcare proxy. With that logic, the parent or guardian can take a look at the patient’s medical records within the patient portal.

But teens are also quickly approaching adulthood, developing their own personal autonomy and responsibility while beginning to encounter more personal health matters. Having their parents or guardians review their patient portals could be a breach of that autonomy and, in some cases, discourage patients from disclosing sensitive health matters, like sexual activity.

“In many health systems, adolescents are permitted separate access to their electronic health record through an online patient portal,” the researchers said, outlining a common solution used across the country.

“The adolescent account often supports appointment scheduling, record sharing, and communication with health care clinicians as a way to promote self-management and engagement as adolescents transition into adulthood.”

To support the parent or guardian, the researchers explained many hospitals and health systems create proxy patient portal accounts, which give caregivers a limited view of the patient portal while still supporting family engagement.

But in an analysis of adolescent patient portals and proxy patient portals at three academic medical centers, the researchers found many guardians are bypassing that proxy portal.

The team looked at the patient portal accounts belonging to teenaged patients with at least one outbound message within a year and used a natural language processing algorithm to determine whether a parent or guardian sent the message. The researchers conducted the analysis on just under 3,500 adolescent patient portal accounts, yielding a total of 25,600 outbound patient portal messages.

The mean age of patient portal owners was about 15 years old.

Anywhere from 52 to 57 percent of adolescent patient portal accounts were accessed by the parent or guardian, the researchers said, depending on which facility the team was looking at. After adjusting for NLP algorithm sensitivity and specificity, anywhere from 64 to 76 percent of adolescent patient portals were accessed by parents or guardians.

This has serious implications for both patient privacy and compliance, the researchers explained.

In as much as patient privacy is concerned, adolescents aging into adult medicine have a right to some protected communication with their medical providers, the researchers contended.

“Confidential communication is necessary for many adolescents to feel comfortable seeking care for sensitive health needs (eg, pregnancy, sexually transmitted diseases, substance use),” the team stated.

“Furthermore, all 50 states in the US have some form of minor consent laws, which have associated rights to privacy protection for the minor according to the Health Insurance Portability and Accountability Act.”

Protected communication between teen and clinician can also help foster autonomy, responsibility, and ultimately healthcare self-management.

What’s more, keeping separate guardian and adolescent patient portal accounts are important compliance goals, the team said. Per the 21st Century Cures Act, healthcare organizations need to be able to share some medical information privately with a teenaged patient, the researchers explained.

Not all parents or guardians accessing their teenagers’ patient portals are doing it as a breach of privacy, the researchers acknowledged. In many cases, teens and guardians may not know there is a proxy portal available, or not know what the proxy account is for.

Some teens might freely give their parents or guardians the passwords to their own patient portal accounts as well, a trend research has documented among aging seniors and their adult children, too.

But considering the privacy and compliance issues at play, the researchers said it will be key for healthcare organizations to explore how best to implement and drive adoption with proxy patient portals.

“Based on these findings, it may be useful for health care systems to examine the current use of adolescent patient portals by guardians and develop strategies to promote proper portal access,” the researchers recommended.

“It is necessary to educate adolescents and their guardians on the concepts of patient portals and proxy accounts, as well as the benefits and limitations of electronic communications, especially given that many adolescents are not familiar with patient portals.”

Such efforts could include dedicated patient intake staff in charge of helping kids and guardians set up the separate patient portal accounts, as well as clinician training in confidential adolescent patient portal use, the researchers concluded.