Pediatricians raise ethical concerns about who can see teen clinical notes online

Rebecca Vesely

About Rebecca Vesely

Rebecca Vesely is AHCJ's topic leader on health information technology and a freelance writer. She has written about health, science and medicine for AFP, the Bay Area News Group, Modern Healthcare, Wired, Scientific American online and many other news outlets.

Today, more than 21 million patients in 47 states have online access to their physician’s notes documenting their medical visits.

While this online access is broadly seen as a positive step towards better communication between patients and doctors, some pediatricians are raising ethical concerns around teen privacy.

These ethical issues are laid out in a paper published in the May issue of Pediatrics (the journal of the American Academy of Pediatrics), written by pediatricians from Harvard Medical School and Boston Children’s Hospital.

“As the movement towards transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and patient disagreements,“ wrote Fabienne C. Bourgeois, M.D., Catherine M. DesRoches, Ph.D., and Sigall K. Bell, M.D., in the paper.

In a scenario detailed in the paper, a 16-year-old girl and her mother visit the pediatrician for the teen’s annual checkup and discuss a treatment plan for moderate asthma. The physician asks the parent to step out of the room so she can have a confidential talk with the teen. During this discussion, the girl tells her doctor that she is sexually active and asks for birth control pills, which the doctor prescribes. She asks the doctor to not disclose that she is sexually active to her parents.

How should this private conversation and contraception plan be documented in the teen’s electronic health record (EHR)? What information should the parent be allowed to view, and how can the teen’s wishes around confidentiality be respected?

Laws on minor privacy differ across states, but in general, teens have the right to confidentially seek contraceptives and treatment for substance abuse and other medical concerns without parental consent, the authors wrote. (Risk of harm to self or others is one exception to provider confidentiality, they added.)

To maintain confidentiality, the physician may create a single visit note in the EHR that is marked private and not accessible to the parent. Or, the physician may create two notes, one for the confidential part of the visit and one where the parent is present, with only the second note accessible online to the parent. In other cases, confidential information in the note can be masked or suppressed so it is not visible in the patient record to the parent, according to the paper.

“Regardless of which approach the clinician chooses, a frank discussion with the adolescent about what will be documented may be critical to ensure the patient’s trust and avoid confusion when the information does not appear on the portal,“ the authors wrote.

Few patient portals or EHRs provide the flexibility needed to address all ethical scenarios around teen medical privacy, the authors explained.

Boston Children’s Hospital offers patients access to the online patient portal starting at age 13, with parents retaining access to non-confidential medical information until age 18, according to the paper.

The rapid transfer of physician notes to online patient portals and EHRs can give patients and caregivers a new level of engagement and understanding of diagnoses and treatment plans. But transparent notes also raise some interesting ethical issues like the ones discussed in this paper.

How is your local or regional children’s hospital addressing teen privacy in the age of online physician notes?

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