Patient Portals for Kids Underused, Often Misunderstood

Parents reported getting too little information about their child’s electronic health portal in a national survey.

Overall, 41% of all parents said they hadn’t been educated on when to use their children’s patient portal within the last 3 years, according to the National Poll on Children’s Health from the C.S. Mott Children’s Hospital in Ann Arbor, Michigan.

Of the more than 2,000 respondents, 78% of parents who were guided on portal usage felt “very satisfied” with their communication capability, compared with just 56% of those who weren’t told when to use the resource.

In total, only 43% of parents said they had a health portal account for their child.

Of those without one, 31% of the parents reported not needing it, 25% were not aware that a patient portal account needed to be made for their child, and about one in five said their provider did not give them the option to create one. Notably, worries over privacy and technical issues only accounted for 6% and 3%, respectively, of parents not setting up a health portal for their children.

“It really is what I would call an information problem,” poll co-director Sarah Clark, MPH, of the University of Michigan in Ann Arbor, told MedPage Today. “So our biggest reason [for not having a patient portal] was ‘I don’t really see a need for it.’ Well, I’m guessing those people probably may be under-informed about all the things they can do with it.”

“A lot of people think the ballgame is how to use the portal, like the technical thing — how do you log in,” Clark explained. In actuality, she said, “it’s when to use the portal, and people want to hear that from their provider.”

Clark said that parents want to hear directly from their child’s provider on when exactly they can use a patient portal to get illness-related advice for their kids or when they can ask for prescription refills. She noted that the parents who received clear instructions on usage had a better experience using health portals for their kids.

“They were more satisfied,” Clark said. “They were more likely to feel like the portal worked for them, saved them time, [and] saved them hassle.”

“And so I think the pediatricians should accept a role, and that role is instructing parents — doesn’t have to be long — on when to use the portal,” she added. “And sort of hidden within that is giving parents permission that that’s an acceptable way to communicate with me, your child’s provider. I think doing that with every patient, every family, might also pick up some of those people that haven’t set something up.”

Those parents who lack a portal account for their kids may be missing out on their benefits. Of parents with accounts for their children, 34% used the resource to get advice on symptoms, illness, or injury, with a vast majority reporting receiving the expected level of guidance, within the expected timeframe, and from the right provider.

In addition to medical advice, 68% of the parents who set up their portals also used it to complete pre-visit forms ahead of appointments, 57% scheduled appointments for their child, and 22% joined telehealth visits. Another 65% used it to see their kids’ test results, 47% requested immunization records, 26% asked for school-, sports-, or camp-related forms, and 25% requested prescription refills.

“I really think that there is a big chunk of the benefit that’s related to a more efficient way to get the administrative aspects of healthcare done,” Clark pointed out.

The poll was conducted by Ipsos in February 2023. It was administered to a nationally representative, randomized sample of 2,100 parents of at least one child ages 0-18 years living in the household. The report was based on responses from 2,095 parents.

One prominent concern among parents uncovered by the poll was losing access to their child’s health information as they age. A majority of parents of teens — 74% — wished to have access to their child’s health records until they turn age 18.

And overall, 31% of parents of teens observed changes in their patient portal access, including to the information and messages from their child that they can see.

Clark and colleagues explained that although the exact age of onset differs depending on individual state minor privacy laws and on the health system, patient portals in all states transition from allowing full-access to medical information to limited, “proxy” accounts once an adolescent ages, in order to “protect the confidentiality of adolescent healthcare, including services for sexual health, mental health, or substance use.” They noted that teens usually still have the option to share their health information with parents or guardians if they choose.

To Clark, this finding emphasized that pediatricians should be informing parents about how their health portal access will change as their child grows up, because that conversation can shape parents’ attitude about the changes.

“That should not be a surprise,” Clark said. “Parents should know that that’s coming. And a really important thing for the pediatrician to do is explain why. I think when parents know what to expect and they understand the reason for it, it becomes less of a negative thing.”