If your child receives medical care at Michigan Medicine, when they turn 11, you will no longer have full access to their medical records. That's because state of Michigan privacy laws say adolescents and teens have a right to confidential healthcare in certain areas.
"Often, parents are surprised by this—one day they can see everything and the next day they can't," said Sharon Kileny, M.D., a general pediatrician and clinical assistant professor at Michigan Medicine. "Sometimes, we get phone calls from parents wondering what happened or why they can't see anything anymore."
Kileny said the automatic switch is strictly due to the law. Parents and guardians are not blocked from viewing all records, just appointment information and visit notes from areas like primary care, psychiatry, adolescent medicine, and gynecology. This is to keep issues like sexual health, sexually transmitted infection testing, substance use, and mental health confidential. If adolescents see a specialist outside of these areas, parents will be able to see the full visit record.
"We don't want to violate confidentiality for our adolescent patients," she said. "The conversation [with parents] is, 'Your child is now at the age where there could be some confidential information in their medical record, and by law you shouldn't have access to it, and that is why we make the switch from the full account to the limited account.'"
Different states and healthcare systems may handle this differently depending on local laws.
What is a healthcare proxy account?
Proxy accounts—online portal accounts that help parents manage their child's medical care—are available from birth. Any parent who has a Michigan Medicine online portal account can request access to add their child under the same account log in under a separate tab.
Under age 11, parents can view visit records and notes just as they can after their own medical visits. But when the child turns 11, this will automatically change to a limited proxy account view where parents have access to some, but not all, of their child's health information.
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Adolescents can also request their own portal accounts, which are separate from the limited proxy account that the parent accesses.
"Some teens are mature enough and responsible enough that they do want to take ownership of their health with the idea that they can make shared decisions with their parents and physicians," Kileny said. "We will sometimes get requests from 12-year-old patients for their own portal accounts. From a developmental standpoint, it's very unlikely that a 12-year-old is mature enough to manage their own health and healthcare."
The No. 1 thing parents should not do: "Parents should not be requesting accounts on behalf of their teens in order to gain access to potentially confidential or restricted information," Kileny says, noting physicians will deny these requests.
If a child has special needs, or if parents are caregivers for adult children with special needs, there is a process to request full online access to health information through Michigan Medicine's Health Information Management department.
What happens at 18
At age 18, there's another automatic change: The limited proxy portal account gets turned off on a patient's 18th birthday.
"Our patients should have 'create a portal account' on their checklist of things to do around their 18th birthday, so they can schedule appointments, ask questions, ask for prescription refills—all the things they need to do because the parents can no longer make medical decisions on their behalf," Kileny said.
This switch can help teens develop more autonomy as they head off to college. Kileny says many of her college-aged patients are more comfortable asking a question or for a prescription refill through a computer than over the phone. Creating their own portal account helps them do these items online—an important step to managing their health.
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"Once a patient turns 18, there really needs to be a transition from primarily talking to the parent to almost exclusively talking to the teenager/young adult," Kileny said.
Conversations about confidentiality
While the specifics of portal access don't guide conversations with teen patients, "we definitely have conversations about confidentiality, what it means, and which kinds of things they can see us for confidentially," she said. "It's important our patients understand we're not going to share information with their parents without their permission."
Pediatricians also help teenage patients understand the importance of talking to their parents including having difficult conversations, Kileny said. But some teens sometimes feel unable to do so.
Ultimately, adolescent and teen healthcare decisions should be made jointly among patients, physicians, and parents, Kileny said, whether parents have access to the full online record or not.