Achieving the National Cancer Plan's Goals: The Role of Nationwide and State-Level Health Data Infrastructure.

Abstract

Nationwide enterprise architecture for health data would enable the effective reuse of existing data assets for applications across cancer care, prevention, and research and is arguably a prerequisite for meeting the NCI goal of halving cancer mortality in 25 years. This study builds on and extends existing calls for a federal initiative that incentivizes the creation of state-designated entities with mandates and authorities to implement and oversee a state's enterprise architecture to collect, integrate, analyze, and share multisource health data for reuse. Granting the proposed state-designated entities relevant authorities would allow them to serve as de facto population-level registries with critical multisource datasets to support cancer research. We describe how these capabilities could contribute to improvements in precision oncology clinical research and care, primary prevention and research on risk factors, secondary prevention, screening and diagnosis, and more effectively measuring progress against cancer. We also propose a framework for moving forward on this initiative, beginning with the development of a Master Plan by a consortium of research, professional, and patient advocacy organizations; a single nonprofit cancer organization; and/or a group of states. This Master Plan would be presented to the federal government for adoption and implementation.