“A Double-Edged Sword”: Influence of the 21st Century Cures Act on the Childhood, Adolescent, and Young Adult Cancer Care Experience

Abstract

Background: The 21st Century Cures Act yielded policy change that allows patients to immediately access components of their electronic health record (EHR) via an online portal. For children, adolescents, and young adults (CAYAs) with cancer and their families, this federal mandate has profound implications. We sought to explore how immediate EHR portal access influences the CAYA cancer care experience. Patients and Methods: We conducted semistructured interviews with parents of children with cancer, adolescents and young adults with cancer, and pediatric oncology health care professionals at 3 National Cancer Institute–designated Comprehensive Cancer Centers. Interviews were recorded, transcribed, and thematically analyzed. Results: Among 84 participants, 71% self-identified as women and 61% as non-Hispanic White. Most participants shared that EHR portal access empowers patients and families to assume greater agency in their cancer care, enhances trust and transparency between patients and their health care team, and bolsters some facets of communication. Although parents and patients acknowledged the potential harms that may be associated with EHR portal access, many described a willing-ness to tolerate this risk in favor of immediate access. Participants suggested numerous changes to information delivery via the EHR portal to better leverage its benefits, minimize harm, and accommodate patient and family preferences. Conclusions: Although key informants recognize that EHR portal access offers important benefits in CAYA cancer care, participants also identified ways in which it can impede on patient, family, and health care team collaboration and well-being. In this new era of information sharing, further reforms are needed to improve health information delivery and the cancer care experience.