Pan-Canadian Cancer Data Strategy

More data are being generated now than ever before—and this holds the potential to transform the way we deliver care throughout the entire Canadian health system, including cancer care.

Together with the Canadian Cancer Society (CCS) we worked with partners throughout the Canadian health and data systems to create the cancer data strategy that will guide efforts to enhance the collection, integration, and use of cancer data.

Why is a cancer data strategy important?

Canada needs a focused plan to ensure we have high-quality cancer data to support better cancer care decisions. With the goal of improving cancer prevention, access to care and outcomes and making cancer care in Canada better and more equitable, the cancer data strategy outlines a framework to guide efforts to enhance the collection, integration and use of cancer data.

Data provides critical information that helps focus cancer research, shape the delivery of cancer prevention, screening, diagnosis, treatment and services, and inform policies that affect the health of people in Canada. Given the tremendous impact data has on cancer care experiences and outcomes for people facing the disease, we embedded patient and caregiver perspectives throughout the strategy.

– Dr. Stuart Edmonds, Executive Vice President of Mission, Research and Advocacy at CCS

What does the cancer data strategy include?

Under the Working together to improve health care for Canadians plan to improve the health care system, the pan-Canadian Health Data Strategy was developed to modernize how health information is collected, shared and used. Complementing these key initiatives, the Partnership and CCS worked with various partners, including provincial and territorial cancer agencies and programs, healthcare organizations, First Nations, Inuit and Métis partners, researchers, policymakers and people with lived cancer experience to create a cancer-specific data strategy that includes:

• a framework to guide the mission, vision, values and success factors for improvements in cancer data that complements the pCHDS, including the Pan-Canadian Health Data Charter and the Shared Pan-Canadian Interoperability Roadmap;
• three priorities for action and investment including:
  • improving the efficiency, timeliness and quality of data capture and access
  • enhancing linkages to current data
  • filling gaps in current data collection and availability
• facilitators that serve as foundational elements to support action on the above priorities;
• a section on the importance of First Nations, Inuit and Métis data sovereignty, with examples of First Nations, Inuit and Métis-led efforts to improve data and data governance;
• initiatives spotlighting current work that aligns with the cancer data strategy’s priorities and facilitators, including First Nations, Inuit and Métis-led efforts to improve data and data governance.

The cancer data strategy addresses the unique and specific needs of the cancer data system, while aligning with the foundational elements of the pCHDS and the supporting Shared Pan-Canadian Interoperability Roadmap in making data more portable and compatible and making it easier to share information across different systems. The cancer data strategy addresses the call for more timely data and leveraging digital solutions, adopting modernized data and communication standards while underlining the importance of data stewardship to drive the development of an interoperable person-centric health data system.

Support First Nations, Inuit and Métis-governed data and data systems

The cancer data strategy highlights First Nations, Inuit and Métis-led efforts to advance data and data governance, including the First Nations Data Governance Strategy which provides critical guidance to help ensure people have access to the right data to effectively plan, organize and deliver health care across Canada.

Work with First Nations, Inuit and Métis organizations and governments is in progress to ensure priorities can inform and advance First Nations, Inuit, and Métis-led, self-determined efforts to improve data and data systems.

A second phase of engagement is underway where enhanced engagements with both First Nations, Inuit and Métis partners and other health and data partners will take place to allow us to increase awareness of the importance of data sovereignty and First Nations, Inuit and Métis-led work to advance data and data governance as well as facilitate knowledge sharing by sharing case studies highlighting partner work. This information will be shared in a fall update.

What does this mean for your work?

Use the links above to explore the work that is underway, then participate in discussions with your own teams to determine if and how these initiatives could be adapted and applied to your organization, community or jurisdiction.

Fulfilling the goals identified in the cancer data strategy will be a team effort. We call on health administrators, researchers and academic institutions, as well as federal, provincial and territorial policymakers to engage with the strategy and its priorities – to help build a more cohesive cancer data ecosystem, one that benefits all people in Canada and is positioned to respond to future challenges.

– Dr. Craig Earle, CEO of the Partnership

Downloadable content

Download the pan-Canadian Cancer Data Strategy