Health information at intersections: Toward more inclusive personal health records for marginalized users

Abstract

This paper highlights findings of two health information‐seeking studies and applies them to the design of personal health library. Both studies focus on themes related to information marginalization and access – the first among Black and Latina tween and teen girls, and the second among autistic (Autistic Self‐Advocacy Network, 2019) teens and young adults. The paper presents emergent findings related to common information values and defensive information behaviors among both study samples and examines implications for design of personal health records & libraries for groups traditionally marginalized in U.S. healthcare systems.