Toward a Data-Driven Future: Health Leaders Urge Federal Strategy to Cut U.S. Cancer Deaths

A unified federal approach to health data sharing, developed in partnership with states, could accelerate progress in cancer prevention, care, and research

LOS ANGELES, July 8, 2025 /PRNewswire/ -- Leaders at the Ellison Medical Institute (EMI) have outlined a bold vision for a nationwide enterprise architecture that could transform how the U.S. uses health data to fight cancer. Published in the American Association for Cancer Research journal, Cancer Epidemiology, Biomarkers & Prevention, their paper argues that a coordinated, large-scale data infrastructure is not only achievable, but essential to significantly reduce cancer mortality in the next decade and beyond.

Building on existing proposals for a federally led initiative, the report advocates for dedicated guidance and funding to support state-designated entities in managing multi-source health data. The proposed enterprise architecture would enable the secure and efficient use of new and existing health data assets – including electronic medical records, insurance claims, public health systems, and scientific research – for applications in cancer care, prevention, and innovation.

This approach promises significant impact across several key areas, including:

• Precision oncology clinical research and care
• Primary prevention through deeper understanding of risk factors
• Secondary prevention via improved screening and diagnostic methods
• Comprehensive measurement of progress in cancer outcomes

"A national framework for organizing and leveraging our health data is the missing piece in the nation's long dedication to reducing the human and financial burden of cancer," said Dr. Gabriel Seidman, EMI policy advisor and a lead author on the publication. "To truly harness the full potential of our health data, we must build strong federal-state partnerships anchored by federal leadership. This infrastructure could serve as the foundation needed for a data-driven future that will transform outcomes for patients, empower clinicians, and accelerate breakthroughs for researchers."

To realize this vision, the authors propose the development of a master plan led by a consortium of research institutions, patient advocacy groups, nonprofit cancer organizations, and a coalition of states. The plan would provide a strategic roadmap to engage federal stakeholders, with three core pillars:

• Promoting consistency across jurisdictions at the federal, state, or local level to encourage data sharing while safeguarding patient privacy
• Supporting innovation and pilot programs that demonstrate scalable, real-world impact in research
• Building a robust, evidence-based business case for federal investment and implementation

"This is the kind of change we need to meet this critical moment and facilitate the delivery of state-of-the-art care to all cancer patients," said senior author Dr. Anna Barker, Chief Strategy Officer at EMI. "Today's healthcare landscape is fragmented, with inconsistent data standards and limited models for information sharing. As AI rapidly becomes an integral part of medicine, establishing a shared, reliable infrastructure with appropriate quality measures is urgently needed to improve both the survival rates and quality of life of those suffering from cancer."

About the Ellison Medical Institute

The Ellison Medical Institute strives to spark innovation, leverage technology, and drive interdisciplinary, patient-centered research to continually enhance health, reimagine and redefine cancer care, and transform lives.

Established in 2016 as a medical research and development center, the Institute features innovation labs for artificial intelligence and molecular analytics and was among the first organizations to vertically integrate the interdisciplinary study and treatment of disease. We offer multifaceted programs, including a preventative medicine and cancer clinic, cross-disciplinary research laboratories, a health policy think-tank, and community outreach and educational programs.

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SOURCE Ellison Medical Institute