Weill Cornell Medicine researchers found that the possibility of parental disclosure through online patient portals led older adolescents to hesitate in sharing complete health information with doctors, putting them at risk of missed diagnoses and treatments. 

Confidentiality concerns were increased among females and those who are sexual and gender minorities, the paper said.

The results, published Oct. 7 in JAMA Pediatrics, are based on a national online survey that targeted 18 to 26 years olds who were eligible to be included on their parents’ insurance plan. Of the 349 participants, 49% were on their parents’ insurance.

The research was led by first author Dr. Marianne Sharko, M.D. ’95, assistant professor of clinical pediatrics and clinical population health sciences at Weill Cornell Medicine and by senior author Dr. Erika Abramson, professor of pediatrics and population health sciences at Weill Cornell Medicine.

Half of the survey respondents said they would hesitate to open an online patient portal if they believed their parents could gain access. If they did open a portal, 55% of all respondents said they would change the sensitive information they shared if they thought their parents would see it. 

One respondent commented, “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 said, “I’m in treatment for PTSD 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.”

While patients now have convenient access to their personal health information electronically, as mandated by the 21st Century Cures Act, this can lead to fear of sharing sensitive issues that would be documented in their charts. As a result, some patients are at risk for negative consequences such as undiagnosed sexually transmitted infections or untreated mental health disorders.

Although portal confidentiality policies are in place, they vary between institutions and are generally developed by internal working groups, which may not include representation by those with increased confidentiality concerns. To provide safe and equitable care for all patients, health care systems must prioritize confidentiality protection for patient portals, the authors concluded.

Marijke Vroomen Durning is a freelance writer for Weill Cornell Medicine.