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Understanding the Needs and Challenges of Cancer Registry Stakeholders
Johnie Rose1,2,3, Akhil Sarangadharan GeethaKumari4, Siran M Koroukian1,3
1Case Comprehensive Cancer Center, Cleveland, OH.
JCO Clinical Cancer Informatics
|May 6, 2026
Summary
Cancer registry data is valuable for researchers and community outreach professionals, but stakeholder priorities often misalign, hindering innovation. Addressing these differences is key to improving data utility and use for cancer research and public health.
Area of Science:
- Population science
- Cancer epidemiology
- Public health informatics
Background:
- Cancer registry data is crucial for understanding cancer burden and informing public health initiatives.
- Innovation in population cancer data is needed to address evolving research and community engagement demands.
Purpose of the Study:
- To contrast the needs and challenges of key stakeholders regarding cancer registry data.
- To identify opportunities and obstacles for innovation in population cancer data.
Main Methods:
- Convened a nationwide panel of 18 population cancer researchers, community outreach and engagement (COE) professionals, and central cancer registry officials.
- Conducted qualitative analysis of interviews, surveys, and meeting transcripts.
- Identified data-related needs and challenges across stakeholder groups.
Main Results:
- All groups recognized the value of accurate registry data.
- Researchers sought granular, clinically relevant data with community-level access.
- COE professionals prioritized cancer burden and social drivers of health metrics with user-friendly tools.
- Registry officials emphasized compliance and privacy constraints.
Conclusions:
- Significant misalignments exist in the priorities of population cancer researchers, COE professionals, and cancer registry officials.
- Further research is required to identify factors enabling successful expansion of cancer registry data utility and use.
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