Study: Young patients hesitant to tell providers information their parents might see

Key takeaways:

• Half of respondents would hesitate to share information with a provider or open a patient portal account.
• Confidentiality concerns were most prevalent among those in gender and sexual minority groups.

Most adolescents and young adults said they would hesitate to share sensitive information with their health care providers if they thought their parents could access it through online patient portals, according to a survey.

“Inadequate confidentiality protection in the portal can result in dangerous situations for some of our adolescent and young adult patients,” Marianne Sharko, MD, MS, assistant professor of clinical pediatrics at Weill Cornell Medicine and New York-Presbyterian, told Healio. “This includes patients who are subjected to abuse within the household and those who live in a home that would not be supportive of gender or sexual minority identification.”

“Fear of parents viewing their information may lead adolescents and young adults to withhold sensitive information that could be important to their health care,” she said.

Sharko and colleagues surveyed 349 young adults aged 18 to 26 years (mean age, 23.5 years; standard deviation [SD], 4.9) who were eligible to be on their parents’ health insurance. They collected survey responses from May through August 2023.

There were 158 women (45%), 163 men (47%) and 26 (7%) people who were part of a gender minority group, according to the researchers. Half of respondents (49%) said they were on their parents’ health insurance.

Overall, 55% of participants said they would change how much sensitive information they would share with health care providers, and 50% would hesitate to create a portal account if their parents could see it. A larger proportion of gender minoritized respondents (69%) and women (63%) said they would be hesitant to share information with their provider compared with men (46%). In addition, more than half of those in gender minoritized groups said they would be less likely to create a patient portal if they thought their parents could see it.

Respondents in sexual minority groups were also more likely than heterosexual respondents to change how much information they would share with their provider (67% vs. 48%; P < .01) and less likely to create a portal account (61% vs. 44%; P < .01).

“Committing to confidentiality protection, when appropriate, and educating adolescents and young adults on what information will be in the portal may foster trust and encourage them to share sensitive information,” Sharko said. “I hope that this study will reach people who are involved in developing confidentiality protection policies to encourage them to provide a voice for those who may hesitate to share their own.”