Cures Act Impact on Pediatric Cancer Care: Benefits and Risks

This study explored how the 21st Century Cures Act, specifically its rule against information blocking, affects cancer care for children, adolescents, and young adults (CAYA). The researchers aimed to understand the impact of immediate access to electronic health records (EHRs) on patients and families, particularly regarding communication and the overall cancer care experience.

The Cures Act has been a significant step toward making health information more accessible, which is crucial for patient empowerment and trust. However, the act's implications in pediatric oncology remain underexplored. Understanding these effects is important for healthcare professionals, patients, and policymakers to balance transparency with the potential emotional impact on families and the healthcare team.

The researchers conducted a qualitative study at three major cancer centers, involving interviews with 84 participants, including parents, young cancer patients, and healthcare professionals. Participants were selected to represent diverse perspectives. Interviews were designed to gather insights into their experiences with EHR access and its effects on care dynamics.

The study found that immediate access to EHRs increased patients' and families' sense of control and trust in healthcare professionals. However, it also led to increased anxiety, especially when receiving sensitive information without prior discussion with a clinician. Healthcare professionals noted an increase in communication demands and altered patient interactions. Participants suggested that while immediate access is beneficial, certain sensitive results might be better communicated in person.

The findings suggest that while the Cures Act has empowered patients and improved transparency, it has also introduced challenges, such as increased anxiety and workload for healthcare professionals. These insights highlight the need for a balanced approach to information sharing, possibly by delaying the release of certain results to allow for professional interpretation and support.

The authors recommend further research into how EHR systems can be improved to enhance patient understanding and reduce anxiety. They also suggest exploring policy changes to delay the release of sensitive information, allowing healthcare teams to prepare and communicate effectively with patients and families. Future studies should consider the perspectives of younger patients and those with limited English proficiency to ensure comprehensive understanding and inclusivity in policy development.

This research was supported by the National Cancer Institute (NCI)–designated Comprehensive Cancer Centers: Yale New Haven Children’s Hospital/Yale Cancer Center, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and St. Jude Children’s Research Hospital. Yale University also provided funding and support for this research.