Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process

Abstract

In the absence of universally accepted standards, medical organizations typically undergo an arduous decision-making process to develop teen portal policies, weighing legal, economic, social, clinical, and technological factors. As a result, portal access policies are highly inconsistent across the United States and within individual states.

Electronic Communication of the Health Record and Information With Pediatric Patients and Their Guardians

“…17 Many EHRs have an all-ornothing privacy and confidentiality approach that is typically used by EHRs for communicating health data such as demographics, problems, medications, and other data (eg, laboratory results, radiology results, and progress notes) and do not support the granular filtering needed to provide the types of protection needed by patients; this is especially true in the special case of pediatric records. 18…”

“…The AAP policy statement "Standards for Health Information Technology to Ensure Adolescent Privacy" 6 contains recommended standards for EHR vendors, including the ability to filter data as previously mentioned, but most EHRs do not support these recommendations in a manner that is easy to adapt. 18 The Guttmacher Institute summarizes state laws aimed at remedying this problem in its report "Protecting confidentiality for individuals insured as dependents." 23 The problem is compounded when health record information is sent from EHRs to health information exchanges, as mandated by federal law, but a certified EHR does not routinely segment (ie, allow for filtering) confidential data to support adolescent privacy without completely blocking access to the entire record.…”

Using the Electronic Health Record to Conduct Adolescent Telehealth Visits in the Time of COVID-19

“…EHR portal access is a critical step to enabling secure telehealth visits. Because of the many legal and ethical considerations that vary by state, no single uniform approach to portal access for adolescents and their parent/proxy exists [6,7]. Our portal development was guided by two general ideas: (1) principle of equivalency between accounts and (2) congruency between access to information via the EHR and our institution's Health Information Management Services (HIMS).…”

Teenager, Parent, and Clinician Perspectives on the Electronic Health Record

“…Because of these challenges, and as a way to protect adolescent confidentiality, many institutions have defaulted to portal systems that share limited information with patients and families by blocking access to medications, laboratory values, notes, and/or problem lists. 4,5 Unfortunately, this has resulted in the limitation of meaningful use of the EHR for these users. 6 Our institution has been fortunate to have an active Family Advisory Council with whom we have worked closely in development of our adolescent functionality and protocols.…”