Data overhaul needed for cancer patients in Canada: advocacy groups – National

Two groups are calling for better data collection, including on race, ethnicity and end-of-life care, to help improve cancer outcomes across the country.

The Canadian Cancer Society and the Canadian Partnership Against Cancer say in a report that other gaps in the data include risk factors to guide cancer prevention efforts, patients’ experiences and social determinants of health.

The groups also want patients’ primary care files to be linked with lab and treatment data so care teams can easily and quickly access test results and documents on cancer, which they say is the leading cause of death in Canada.

They say more data would help researchers contribute to clinical trials, and administrators could better plan for resources, especially in underserved communities.

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Health Matters: Why race-based data matters in healthcare, and cancer on the rise in Canada

The report calls on Statistics Canada and the Canadian Institute for Health Information to work with provinces and territories to build and maintain a system that allows data to be analyzed for various demographics.

They plan to release more details on a Canada-wide data strategy later this year following further consultation with First Nations, Inuit and Metis to help develop practices for culturally safe care and the governance of health data.