Imagine a world in which a cancer patient’s health data follows them across the whole healthcare system, from their first appointment with their family doctor, through radiation and surgery, to post-treatment care. Every step of the way, high-quality and up-to-date information about their health would be available to them and all the professionals involved in their case, allowing for better, more timely and more equitable decision-making and care. This would also provide decision-makers with a more complete picture of the processes and outcomes of care to inform policy.
This kind of approach to data is on the horizon in Canada: in May 2022, the Pan-Canadian Health Data Strategy laid out high-level requirements for improving point-of-care data access throughout the healthcare system. In July 2023, the Canadian Partnership Against Cancer (the Partnership) and the Canadian Cancer Society (CCS), working with partners throughout the Canadian health and data systems, launched the Pan-Canadian Cancer Data Strategy.
Building on strong foundations
The Cancer Data Strategy complements the Pan-Canadian Health Data Strategy which aims to modernize the health system by improving how health information is collected, shared, used and reported to people in Canada.
The Cancer Data Strategy also aligns with the goals of the Shared Pan-Canadian Interoperability Roadmap to help ensure different digital health systems can interact with one another so a patient’s health information can move with them throughout the system. This is paramount for cancer patients who interact with different parts of the healthcare system throughout their journey, from screening to treatment to follow-up and beyond.
Investing in a cancer-specific data strategy is critical, not just because of the prevalence of the disease – two out of every five people in Canada will be diagnosed with cancer in their lifetime – but also because there are unique data systems such as cancer registries and radiation treatment files in the cancer data ecosystem. Additionally, the relatively good organization of cancer data makes cancer an ideal test case for initiatives under the broader health data strategy. The Cancer Data Strategy will help tackle the urgent need to close gaps in cancer data in Canada, leading to improvements in cancer prevention and care while also helping to address the needs of those who survive it. Additionally, the strategy will support better planning, evaluation and research to ensure that Canada’s cancer system remains strong and effective.
The strategy includes three priorities for action and investment:
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- Improve the efficiency, timeliness and quality of data capture and access.
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- Enhance interoperability and linkages to current data.
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- Fill gaps in current data collection and availability.
Achieving these priorities while centring the needs of equity-deserving groups, and supporting and upholding First Nations, Inuit and Métis data sovereignty, will ensure that all people in Canada have access to patient-centric, innovative and high-quality cancer care.
Collaborating to achieve the goals of the cancer data strategy
The work underway at the federal level toward the Pan-Canadian Health Data Strategy has created the supportive environment needed to achieve the priorities of the Cancer Data Strategy. In turn, the Cancer Data Strategy operationalizes many of the goals of the Health Data Strategy.
To achieve the goals of the Cancer Data Strategy, it is crucial that health administrators, researchers and academic institutions, First Nations, Inuit and Métis partners, as well as federal, provincial and territorial policymakers continue to invest in building a more cohesive cancer data ecosystem.
Together with provincial and territorial partners, the Partnership and CCS are pushing ahead with innovations in cancer data. We urge everyone with a stake in the healthcare system – and particularly government and healthcare leaders – to lend their support so we can move quickly to establish a comprehensive cancer data system that benefits all people in Canada, today and in the future.
Learn more at partnershipagainstcancer.ca.
As the steward of the Canadian Strategy for Cancer Control, the Partnership works with Canada’s cancer community to take action to ensure fewer people get cancer, more people survive cancer, and those living with the disease have a better quality of life, and all people in Canada have equitable access to quality cancer care. The Partnership is funded by Health Canada.
The views expressed represent those of the Partnership.
