If being of adolescent age of itself isn’t enough on its own, adolescents’ sensitive health information is often accessed through patient portals by their legal guardians, creating concern surrounding privacy issues for minors.
In a Journal of the American Medical Association (JAMA) Network Open “Original Investigation” article, entitled “Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians,” researchers asked the question, “How frequently are adolescent patient portal accounts accessed by guardians?”
The researchers explain that in many health systems, adolescents are given separate access to their electronic health record (EHR) and the account includes appointment scheduling, record sharing, and communication with clinicians. Being able to communicate confidentially is important to many adolescents, especially when it comes to sensitive health needs like pregnancy, sexually transmitted diseases, and substance abuse. Additionally, all 50 states in the U.S. have a form of minor consent laws, which have related rights to privacy protection for the minor under the Health Insurance Portability and Accountability Act (HIPAA).
That said, “However, there is evidence that guardians may be messaging directly from the patient account instead of using the intended proxy account. One study in adults with diabetes estimated that close to half of patient portal accounts have messages authored by proxies. However, the prevalence of this activity in adolescent patient portals is not known.”
“This issue is important in light of the 21st Century Cures Act Final Rule, which requires health systems to afford patients and their legal representatives access to selected portions of their health record electronically,” the researchers write. “If guardians use the adolescent’s account for portal access instead of their proxy account, sensitive information meant to be accessible only by the adolescent could become visible to others, thus compromising adolescent confidentiality.”
The researchers explain that “A cross-sectional study to estimate the prevalence of guardian access to adolescent patient portal accounts was conducted at three academic children’s hospitals [Stanford Children’s Health (Palo Alto, Calif.), Rady Children’s Hospital (San Diego, Calif.), and Nationwide Children’s Hospital (Columbus, Ohio)]. Adolescent patients (aged 13-18 years) with access to their patient portal account with at least one outbound message from their portal during the study period were included. A rule-based natural language processing algorithm was used to analyze all portal messages from June 1, 2014, to February 28, 2020, and identify any message sent by guardians. The sensitivity and specificity of the algorithm at each institution was estimated through manual review of a stratified subsample of patient accounts. The overall proportion of accounts with guardian access was estimated after correcting for the sensitivity and specificity of the natural language processing algorithm.”
The researchers write that “A total of 3,429 eligible adolescent accounts containing 25,642 messages across three institutions were analyzed. A total of 1,797 adolescents (52 percent) were female and mean (SD) age was 15.6 (1.6) years. The percentage of adolescent portal accounts with apparent guardian access ranged from 52 to 57 percent across the three institutions. After correcting for the sensitivity and specificity of the algorithm based on manual review of 200 accounts per institution, an estimated 64 percent percent (95 percent confidence interval (CI), 59 to 69 percent) to 76 percent (95 percent CI, 73 to 88 percent) of accounts with outbound messages were accessed by guardians across the three institutions.”
The researchers discuss that there could be a number of reasons that guardians are accessing the adolescent accounts, including issues related to workflow at the institutions, misunderstanding of the portal account design by adolescents and their guardians, adolescents meaningfully sharing their portal access with their guardians, and guardians secretly accessing adolescents’ accounts.
The researchers state that “Regardless of the actual reason in each case, our finding that a substantial portion of adolescent patient portal accounts were used by guardians raises questions. As an exploratory analysis, we observed that accounts of adolescent patients that appeared to be used by guardians were associated with fewer sensitive health topics in their messages to clinicians in a limited manual review sample. Although further studies with more data and control for confounders are warranted, our preliminary observation raises questions whether adolescents may be less willing to share sensitive health topics via the portal when aware that their guardians have access to their portal accounts. Previous studies have suggested that adolescents may not seek care for sexual health if parental notification was mandated.”
The researchers conclude that perhaps health systems should investigate the use of adolescent patient portals by guardians and implement strategies, like education for both adolescents and parents, to promote proper access to patient portals. Additionally, the researchers say that a staff dedicated to patient portals and clinician training on confidentially will also help protect adolescents’ privacy.
