Tag Archives: patient portals

New study highlights privacy questions in teenagers’ electronic health records

Photo by Evolution Labs via Flickr.

Adolescent online patient portals can be set up confidentially so information about pregnancy testing, sexually transmitted diseases, mental health, and drug and alcohol use, etc., are kept private from parents and guardians. But a new study published in JAMA Network Open from three children’s hospitals revealed that more than half of adolescents’ accounts were inappropriately accessed by parents and guardians.

The study suggests there is more work to do both in designing these portals and in educating parents and their teens about them, the authors said.

Study methodology

Participating sites included Stanford Children’s Health in Palo Alto, Calif.; Rady Children’s Hospital in San Diego; and Nationwide Children’s Hospital in Columbus, Ohio — all of which allow adolescents to have patient portal accounts. Guardians can register for proxy accounts.

Investigators used a natural language processing algorithm to analyze all messages sent from patient portal accounts for 13- to 18-year-olds from June 2014 through the end of February 2020 to identify notes sent by parents/guardians. Some manual reviews at each institution were also performed. The study looked for either third-person references to the adolescent, phrases such as “my child,” or incidences where the signature matched the name of a guardian on file.

A closer look at the results

Researchers analyzed 25,642 messages sent from 3,429 adolescent accounts across the three institutions. After adjusting for sensitivity and specificity of the algorithm, they found that an estimated 64-76% of all accounts with outbound messages were accessed by parents and guardians. Parent access decreased as patients aged, from 59-64% in records for 13- to 14-year-olds to 40-50% in those for 17- to 18-year-olds.

Compliance with federal regulations and state confidentiality and consent laws for adolescents requires a reliable mechanism to share protected health information without guardian knowledge, the authors said. Thus, the study suggests that adolescent portal accounts as they exist today may be lacking.

“The 21st Century Cures Act has encouraged the sharing of health information with patients, which we totally endorse and really want to happen,” said senior study author Natalie Pageler, M.D., the chief medical information officer for Stanford Children’s Health, and a clinical professor of pediatrics and medicine at Stanford University, in a phone interview. “It’s the right thing to do for patients and families. But we think this issue [of parents accessing their teenagers’ accounts] is under-recognized…Many parents are getting access to information that they shouldn’t be, which creates a risk for teens.”

This includes the risk that if teens don’t trust that they have a confidential relationship with their provider, they won’t seek the care they need, Pageler said. Worse, for some teens there may be a risk of physical violence or retribution from parents.

According to Pageler, teenagers should have their confidential accounts, and parents can set up a proxy one granting them access to other health information that doesn’t fall under the above-mentioned categories. But it’s tricky, as state laws regarding consent can vary.

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