Priority 2: Enhance linkages to current data
Advancing this priority will improve the ability to draw on data from multiple (federated) data sets by enhancing interoperability; promoting the use of standardized identifiers; and ensuring various data sets are accessible, ready for analysis and easily linkable. These actions will use innovative technologies to enable interoperability, including seamless use and integration of data elements available across all relevant data systems and are not intended to develop new or combined physical databases.
The strategy recommends the following actions:
- modernize and sustain infrastructure for cancer data interoperability, integration and linkages;
- make diagnostic and treatment data accessible and linkable;
- make primary care data accessible and linkable;
- make genomic data accessible and linkable.
How this priority is being advanced in Canada
The following are examples of initiatives being implemented to advance this priority and improve health outcomes for people across the country.
Consider how you can apply these learnings in your own organization jurisdiction to help enhance the cancer data system.
CancerCare Manitoba is working to improve the standardization, quality and accessibility of chemotherapy, radiation and surgery data collected from multiple sources. Its new clinical platform will automate data cleaning and linkage processes, reducing the need for manual data extraction — so decisions on how to enhance cancer service delivery in Manitoba can be made faster.
The project will start by focusing on radiation therapy data. By applying artificial intelligence and natural language processing to both structured and unstructured data, this initiative will make it possible to extract a more complete set of radiation therapy data. This will result in more streamlined and standardized processes for integrating treatment data, laying the groundwork for enhanced analytics and reporting that can inform the organization’s decision-making processes.
The Ontario Hereditary Cancer Research Network (OHCRN) will transform hereditary cancer research and patient care in the province by centralizing and connecting clinical and genetic information. Currently, data on hereditary cancers is scattered among several disconnected registries, making it difficult to conduct research in this area.
OHCRN is funded by the Ontario Institute for Cancer Research (OICR) and will be Ontario’s first province-wide registry for hereditary cancers. Starting in 2025, participants will be able to enrol online and provide consent for data sharing. By linking with other provincial databases and providing researchers with access to this information, OHCRN will power game-changing research on hereditary cancers. OHCRN will also offer opportunities for patients to participate in clinical trials and access precision therapy, resulting in more equitable care across the province. Ultimately, OHCRN will provide a more complete picture of hereditary cancers across Ontario, improving their prevention, diagnosis and treatment.
Prince Edward Island launched an initiative to streamline and automate the transfer of data into its cancer registry. The Electronic Synoptic Pathology Reporting Initiative (ESPRI) involves mapping cancer stage data from the College of American Pathologists’ synoptic template into the PEI Cancer Registry’s software.
As of fall 2023, ESPRI has successfully updated the mapping rules from Collaborative Staging to the American Joint Committee on Cancer’s TNM standard and 17 tumour-related fields are being mapped into the cancer registry software. This includes eight fields relevant for all types of cancer, as well as specific fields related to melanoma, breast, prostate and colorectal cancers.
Direct mapping of tumour-related fields saves cancer registrars’ time in re-keying data from synoptic pathology reports into the cancer registry software and eliminates the risk of manual data entry errors. This will enhance the accuracy and efficiency of cancer data management, providing a clearer picture of cancer in PEI to support better planning and improved patient outcomes.
The Newfoundland and Labrador Health Services cancer care program has adopted a platform to enable healthcare providers to proactively deliver care, supported by real-time insights. Launched in 2020, Health Connect has consolidated the province’s three cancer screening data repositories (breast, colorectal and cervical) into a single screening database. This enables each screening program to continue to run its own individual campaigns while benefitting from a shared IT infrastructure. In this way, the Health Connect platform enhances cancer screening management, expands access to analytics and insights, and improves communication to people in the province to increase early detection rates.
Health Connect also serves as a broader care management platform, enhancing various points along the cancer journey for both patients and providers — and has the potential to evolve into a full enterprise health platform that can leverage enhanced analytics to help transform healthcare outcomes.