CancerX Data Sprint: Advancing national oncology data standards through a unique public-private partnership.

Abstract

e23283 Background: In a concerted effort to enhance the quality, accessibility, and effectiveness of comprehensive real-world cancer datasets, CancerX, a public-private partnership announced by the White House recently conducted a demonstration project, the CancerX Data Sprint. CancerX Data Sprint attempted a novel approach to quickly inform collective efforts of the Center for Medicare and Medicaid Innovation (CMMI), the National Cancer Institute (NCI), the US Food and Drug Administration (FDA), and the Office of the National Coordinator for Health Information Technology (ONC) to advance cancer-related data standards. Specifically, at the intersection of CMMI’s Enhancing Oncology Model (EOM) and the development of ONC’s United States Core Data for Interoperability (USCDI+) – Oncology extension, CancerX leveraged its unique model and broad membership to report novel insights to advance data-driven innovations in oncology research, care, and policy. Methods: From Sept to Dec 2023, the Data Sprint convened 150+ member organizations from industry and government partners to 1) Identify the high-value research questions that could be asked about the standardized real-world data (RWD) generated through EOM 2) Supplement the existing data elements with new ones to extend and enhance the ability to conduct scientific, clinical, and research inquiries with comprehensive datasets. The CancerX community opined via surveys, written feedback, and live workshops to identify key data elements, discuss their clinical value and technical feasibility, and consider their use in real-world settings as part of the comprehensive datasets. Results: Building on the current EOM clinical data elements, we identified and reported 15 new clinical data elements for considerations with high clinical utility and ease of technical abstraction. This comprehensive RWD encompasses a diverse range of patient demographics, clinical details, treatment histories, and outcomes, creating a more accurate and inclusive portrayal of cancer treatment effectiveness and patient journeys. This depth of information is crucial for optimizing the personalization of treatment pathways, conducting impact assessments, and addressing healthcare disparities. Essentially, the new datasets serve as a valuable repository of insights, driving advancements in cancer research, treatment and elevating care quality. Conclusions: CancerX remains committed to supporting federal data initiatives like USCDI+ Cancer standards development and others by providing recommendations for essential data elements implementation to enhance clinical utility, technical feasibility, and exchange of standardized cancer data. By adopting a unique approach and assembling an interdisciplinary group, we can ensure that data standardization efforts prioritize high-utility data elements, ultimately maximizing benefits for our patients.