“A double-edged sword”: Influence of the 21^st Century Cures Act on the childhood cancer care experience.

360 Background: The 21 st Century Cures Act allows patients to immediately access their electronic health record (EHR) via an online portal. For pediatric patients with cancer and their families, this federal mandate has profound implications. We sought to explore perspectives of key stakeholders on how the Cures Act influences the childhood cancer care experience, receipt of results, and communication with the oncology team. Methods: In a multi-center qualitative study at three National Cancer Institute-designated comprehensive cancer centers, we conducted semi-structured interviews with adolescent and young adult patients with cancer (n=26), parents of children with cancer (n=32), and interdisciplinary clinicians in pediatric oncology (n=23). Interviews were audio-recorded, transcribed verbatim, coded, and thematically analyzed. Results: Across 81 participants, 73% self-identified as women, 69% as White race, and 17% as Hispanic/Latinx ethnicity. Most patients and parents perceived the EHR portal to be a convenient, centralized record-keeping tool that enables them to prepare for appointments, track treatment progress, and assume greater agency in their cancer care. Many patients and parents preferred the immediacy of the portal to bypass wait times and facilitate real-time decision-making. Access to notes and results on the portal was widely perceived to enhance communication and appeared to engender greater trust in the oncology team. Simultaneously, patients and parents acknowledged that instant access to results laden with medical jargon can heighten confusion, worry, and anger, particularly upon receipt of concerning results (i.e., pathology or radiology results revealing a new diagnosis of cancer or relapse) before meeting with a clinician. Clinicians generally favored the EHR portal and reported adapting their practices to provide greater anticipatory guidance, occasionally altering language in clinical notes to avoid upsetting patients or families. However, several clinicians expressed concern about situations in which high-stakes results are instantly available to patients and the responsible clinician has not yet had an opportunity to interpret and discuss. Clinicians spoke of shifting expectations regarding prompt communication of results. Many clinicians would prefer a system in which a time delay is built into the release of particularly sensitive results. Overall, clinicians reported that the EHR portal may increase administrative burden and interfere with clinical workflow. Conclusions: While key stakeholders recognize that the Cures Act offers important patient-centered innovations, many participants identified challenges that impede on optimal implementation. This study underscores the need to establish best practices for integrating use of the EHR portal into routine childhood cancer care.