Concerns Over Confidentiality in Patient Portals May Impact Adolescent Health Disclosure

A recent study by Weill Cornell Medicine highlights a significant barrier in adolescent healthcare: the fear of parental disclosure through online patient portals. The study found that this concern leads many older adolescents, especially females and individuals who identify as sexual or gender minorities, to withhold critical health information from their doctors. This reluctance, researchers say, puts them at risk of missed diagnoses and inadequate treatment, underscoring a need for improved confidentiality measures.

Published in JAMA Pediatrics, the study surveyed 18 to 26-year-olds who were eligible to remain on their parents' insurance plans. Among the 349 respondents, nearly half (49 percent) were on their parents' insurance. Led by Marianne Sharko, MD, MSc, and Erika Abramson, MD, MSc, professors at Weill Cornell Medicine, the research reveals that 50 percent of participants would hesitate to use online patient portals if they believed their parents could access their information. Moreover, 55 percent of all respondents admitted they would alter or withhold sensitive information if they thought their parents might see it.

The findings illustrate how fear of disclosure affects care-seeking behaviors. One respondent shared, “I don’t want my parents to know I’m a trans person because that would put me in danger. I should be able to receive care I need without being afraid.” Another expressed concern over confidentiality, stating, “I’m in treatment for PTSD [post-traumatic stress disorder] from abuse in childhood. My mother would be livid if she found out things I’ve told my therapist…informing her that I have PTSD would tip her off that I ‘blabbed’ about the abuse.”

According to the study, while the 21st Century Cures Act mandates that patients have electronic access to their health information, this accessibility may deter some adolescents from being open about their health concerns. Sensitive issues such as sexually transmitted infections and mental health disorders risk going unaddressed when patients fear parental oversight, the authors explained.

The research also highlighted variability in portal confidentiality policies across healthcare institutions. The authors explained that these policies are often developed by internal working groups that may lack representation from those most impacted by confidentiality concerns. In their conclusion, the authors advocated for healthcare systems to prioritize secure and confidential access to patient portals, ensuring that all adolescents can seek the care they need without fear of disclosure.