Researchers discovered that the potential for parents to see information through online patient portals made older teens reluctant to share full health details with their doctors, leading to a risk of overlooked diagnoses and treatments. The study highlighted that worries about confidentiality were more pronounced among females and individuals from sexual and gender minorities.
A study conducted by researchers at Weill Cornell Medicine showed that the chance of parental access via online patient portals made older adolescents hesitant to fully disclose their health information to doctors, thereby increasing the likelihood of missed diagnoses and treatment opportunities. The findings indicated that concerns about privacy were heightened among females and members of sexual and gender minorities.
The study, published on October 7 in JAMA Pediatrics, originated from a national online survey targeting individuals aged 18 to 26 who were eligible to be listed on their parents’ insurance plans. Among the 349 participants, 49% were indeed covered by their parents’ insurance.
The research was spearheaded by Dr. Marianne Sharko, an assistant professor specializing in clinical pediatrics and population health sciences at Weill Cornell Medicine, along with senior author Dr. Erika Abramson, a professor in pediatrics and population health sciences at the same institution.
Half of the individuals surveyed indicated they would be cautious about opening an online patient portal if they believed their parents could access it. Additionally, if they did create an account, 55% of them stated they would modify the sensitive information shared in the portal out of concern for parental visibility.
One participant expressed, “I don’t want my parents to find out I’m transgender because that could threaten my safety. I deserve to receive the necessary care without fear.” Another added, “I am undergoing treatment for PTSD due to childhood abuse. My mom would be furious if she discovered what I’ve told my therapist… revealing that I have PTSD would indicate that I talked about the abuse.”
Although patients can now access their health information electronically, as required by the 21st Century Cures Act, this accessibility can lead to anxiety over disclosing sensitive matters that may be noted in their medical records. Consequently, some patients may face adverse outcomes, such as undiagnosed sexually transmitted infections or untreated mental health issues.
Despite the existence of confidentiality policies for patient portals, they differ across healthcare institutions and are usually devised by internal groups that may not adequately represent those with heightened privacy concerns. To ensure safe and fair care for all patients, healthcare systems must prioritize strong confidentiality protections for patient portals, the authors emphasized.
This research was supported by funding from the National Institutes of Health under grants R01HL161458 and R01NS123639, as well as the Weill Cornell Medicine Jumpstart Career Development Grant.
