The Variation in Patient Portal Access for Adolescents in the United States: How Different Medical Centers Manage their Adolescent Access

Introduction Adolescence is a time when patients are approaching autonomy, both developmentally and legally. Yet they are still minors and are likely to encounter contradictions between situations in which they are treated as children and ones in which they are treated as adults. Being able to access their medical information may enable adolescents to take on a participatory role in their health care. However, federal policy, state law, and community norms are not consistent regarding adolescent healthcare and privacy. For example, in some regions and under some circumstances, adolescents may have consent and privacy rights similar to those of adults, with the right to make some, or all, of their own sensitive medical decisions privately. In other cases, parental notification is the norm, or guidance is unclear or lacking. In the absence of national guidelines, medical centers encounter serious challenges when developing policies about adolescent access to medical records via patient portals. The American Academy of Pediatrics has made recommendations, but these are not binding. To explore diversity in adolescent privacy policies and identify common approaches, we are conducting a qualitative study with key informants from different types of medical organizations in different regions of the country. The main objective is to identify diversity in adolescent privacy features within the patient portal. Another objective is to enumerate the factors involved in making portal access decisions. A third objective is to identify the potential need for more formalized guidance and standards on privacy features within the patient portal.