Facilitators
Several actions were determined to be foundational to supporting further initiatives to enhance the cancer data landscape in Canada. Addressing the following foundational elements will enable the identified priorities to be effectively actioned, paving the way for success:
- understanding the data landscape;
- building infrastructure and adequately resourcing it to support sustainability;
- improving data literacy among health system partners;
- elevating the patient voice in planning and implementing data activities.
Understanding the data landscape
The strategy recommends:
- developing and maintaining a publicly accessible inventory of cancer-relevant data holdings;
- conducting periodic gap analyses of current data holdings;
- developing and maintaining a user guide to support the use of cancer-relevant data holdings.
How this facilitator is being advanced in Canada
The following is an example of an initiative being implemented to better understand the cancer data landscape in Canada. Consider how you can apply these learnings in your own organization or jurisdiction to help enhance the cancer data system.
The Saskatchewan Cancer Agency (SCA) launched a data and analytics strategy to evaluate and enhance the quality and responsiveness of its services so it can better meet patient and family needs. The SCA is working to improve data access and storage, including automated reporting and development of a cancer data repository that includes clinical, registry, pharmacy, screening and other cancer control data. In turn, this has improved its analytics capabilities, leading to faster report generation in support of decision-making, planning, quality improvement and research. It will also enable results to be more easily analyzed and turned into knowledge products by epidemiologists, data scientists and other experts.
Building infrastructure and adequately resourcing it to support sustainability
The strategy recommends:
- investing in integration infrastructure across the ecosystem;
- developing cancer data systems that support more real-time data flow;
- allocating sufficient resources to maintain systems over the long term.
How this facilitator is being advanced in Canada
The following is an example of an initiative being implemented to build and adequately resource cancer data infrastructure in Canada. Consider how you can apply these learnings in your own organization or jurisdiction to help enhance the cancer data system.
The Oncology Transformation Project (OTP) is a unique partnership between the Nova Scotia Health Cancer Care Program (NSH CCP), Research & Innovation and Varian to implement province-wide oncology digital health solutions enabling real-time connection between health care providers and patients. OTP includes an oncology-specific clinical information system (ARIA®), a patient engagement platform (noona®), and a data analytics platform (InSightive Gen 2).
Through OTP, the NSH CCP is an early adopter in global efforts to implement oncology data standards like the Operational Ontology for Oncology, established by international professional societies, and will be shared with cancer system partners across Canada in a variety of ways including through initiatives under the pan-Canadian Cancer Data Strategy. The OTP’s goal is to demonstrate the feasibility of big data collection from both urban and rural populations, enabling real-world, data-driven clinical improvements. It will support innovative clinical models of care and outcome reporting, with a focus on enhancing local and patient care, as well as system-wide improvements through data sharing and research collaboration.
Improving data literacy among health system partners
The strategy recommends:
- working with organizations and strategies to improve data literacy;
- using a variety of methods to enable all partners to contribute meaningfully to data-related work.
Case studies will be added as they become available.
Elevating the patient voice in planning and implementing data activities
The strategy recommends:
- embedding patient, family and caregiver voices in all cancer data initiatives;
- grounding initiatives in patient, family and caregiver needs and priorities;
- using a variety of methods to engage patients, families and caregivers.
Case studies will be added as they become available.