Priority 3: Fill gaps in current data collection and make data accessible for linkage and analysis

Advancing this priority will make data available about individuals in Canada seeking care across the cancer control continuum and about important parts of the cancer experience that are not represented in current data sets. Without this data, and without linking it to other cancer data systems, we have an incomplete picture of the effects of cancer on equity-deserving groups and of opportunities or challenges in key domains of the cancer control continuum.

The strategy recommends the following actions, which represent enhanced or net-new data collection to expand the comprehensiveness of available data:

  • fill in gaps on social determinants of health;
  • enhance collection of patient-reported outcomes and experience data;
  • collect data on patient race, ethnicity and other equity-focused characteristics;
  • enhance collection of survivorship data;
  • enhance collection of data on palliative and end-of-life care;
  • fill in gaps in data on risk factors to guide prevention efforts.

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 or jurisdiction to help enhance the cancer data system.

Data Environment for Cancer Inquiries and Decisions (DECIDe) was designed intentionally to meet the data and information needs of cancer clinical operations and planning teams, quality improvement practitioners and researchers by linking diverse cancer data sources pertaining to diagnosis, treatment, care and mortality. Prior to DECIDe, cancer-related data were held in multiple different sources and were managed by different people, which made it challenging and time-consuming to find and link the data needed to answer priority questions relevant to the delivery of cancer treatment and care. Now data is embedded within the DECIDe data environment for a streamlined pipeline, organizing and transforming the data for easy use by analytical teams to help address important questions in the cancer care environment. It has also enabled Cancer Care Alberta to leverage the new Alberta-wide Electronic Medical Record, Connect Care, for expanded treatment information.

Ultimately, bringing this data together dramatically reduced the time and resources required to link and analyze cancer information. It also increases the availability of real-world data that can be used to address pressing challenges and inform new models of cancer care.

This project links cancer registry and administrative health data to the national Canadian Partnership for Tomorrow’s Health (CanPath) data set to enhance important cancer research in Canada. The CanPath data set captures information on Canada’s largest health research cohort, representing 1 in 100 Canadians, including details about people’s lifestyles, family histories, genetics, environment and more.

By linking the CanPath data set to cancer registry data from four different provinces as well as data on health care use from the Canadian Institutes of Health Information, this project will improve understanding of the causes of cancer and what happens to people when they develop cancer. By creating a single point of access for a wealth of cancer data, it will greatly increase the accessibility, timeliness and comprehensiveness of cancer data across Canada. It will also pave the way for similar linkages in the future, including to other non-cancer databases and disease registries, offering further opportunities to improve health outcomes.