Twenty-First Century Data Systems: Evolving Cancer Registries to a Learning Health System

Area of Science:

• Oncology
• Medical Informatics
• Public Health

Background:

• Cancer data is increasing due to aging populations and improved treatments, creating reporting challenges.
• Healthcare systems need to meet diverse cancer data reporting requirements for various stakeholders.
• The proliferation of cancer registries has led to data heterogeneity and non-standardized transport.

Purpose of the Study:

• To explore strategies for enhancing cancer surveillance through improved registries.
• To address the need for modernized cancer data architecture supporting a Learning Health System.
• To identify requirements for sustained investment in data infrastructure.

Main Methods:

• Convened a workshop with diverse stakeholders including cancer centers, professional societies, industry, and government agencies.
• Discussed challenges in cancer data interoperability and standardization.
• Explored the role of federal policy and private initiatives in modernizing cancer data architecture.

Main Results:

• Cancer registries exhibit heterogeneity in data vocabularies and transport standards.
• Federal policies and private initiatives aim to modernize cancer data architecture for a Learning Health System.
• Sustained investment in data infrastructure requires viable business models.

Conclusions:

• A computational approach to cancer registries can foster interoperability and data sharing.
• Healthcare systems must invest in data infrastructure to integrate new data sources like genomics and wearables.
• Evolving business models is essential to sustain investments in the cancer data ecosystem.