Date of Award

January 2025

Document Type

Open Access Thesis

Degree Name

Medical Doctor (MD)

Department

Medicine

First Advisor

Prasanna Ananth

Abstract

The 21st Century Cures Act yielded policy change that allows patients toimmediately access components of their electronic health record (EHR) via an online portal. For children, adolescents, and young adults (AYAs) with cancer and their families, this federal mandate has profound implications. We sought to explore how immediate EHR portal access influences the childhood cancer care experience. We conducted semi-structured interviews with key informants, including parents of children with cancer, AYAs with cancer, and pediatric oncology healthcare professionals, at three National Cancer Institute-designated comprehensive cancer centers. Interviews were recorded, transcribed, and thematically analyzed. Across 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 healthcare team; and bolsters some facets of communication. While parents and patients acknowledged the potential harms that may be associated with EHR portal access, many described a willingness to tolerate this risk in favor of immediate access. Healthcare professionals described implementing practice changes since implementation of the Cures Act, such as modifying language in clinical notes and setting expectations regarding timing of result release with patients. Healthcare professionals and AYAs also described the challenges that the Cures Act poses to adolescent privacy. Finally, participants suggested numerous changes to information delivery via the EHR portal to better leverage its benefits, minimize harm, and accommodate patient and family preferences. While key informants recognize that EHR portal access offers important benefits in childhood cancer care, participants also identified ways in which it can impede on patient, family, and healthcare 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.

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This is an Open Access Thesis.

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