Canadian Cancer Society releases new national strategy for improving cancer data collection

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The Canadian Cancer Society (CCS) has released a new strategy for collecting data on cancer in Canada, one that they hope will address serious gaps.

It’s the first national health strategy to focus on cancer-specific challenges, according to a press release from CCS, who worked with the Canadian Partnership Against Cancer to create the strategy.

The goal is to enhance the collection of data on cancer in Canada in order to better inform policies around health care for cancer patients across the country.

“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,” Dr. Stuart Edmonds, executive vice president of mission, research and advocacy at CCS, said in the release. “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.”

The leading cause of death in Canada is cancer. According to the report, more than 230,000 people were estimated to have been diagnosed with cancer in 2022, with 85,000 estimated to have died of it.

Without proper data collection, we won’t be able to understand the scope of the issue — or the potential strategies that could help us combat cancer in Canada, according to the report.

Authors say this new cancer data collection strategy is designed to work in concert with the Pan-Canadian Health Data Strategy (pCHDS), which was compiled by the Public Health Agency of Canada in 2020 in response to some of the issues in health-care data collection revealed by the COVID-19 pandemic.

A SCATTERED DATA LANDSCAPE

Currently, cancer data is collected and stored in pockets across the country — by hospitals, cancer centres, clinics and labs, provincial/territorial governments and public health programs — and not all of it is equally accessible.

Some data is standardized and available to various users, such as through provincial cancer registries and the Canadian Cancer Registry, which is a population based registry that collects data on each new primary cancer case diagnosed in Canada since 1992.

But other datasets sit at the local level with little way for health-care professionals from other regions to access it or link it to their own data to gain a better picture of the disease across the country.

“Even data that is organized and made available centrally (through the cancer registries, for example) is not always as timely, complete and comprehensive as it could be,” authors wrote.

“These gaps have real consequences. When COVID-19 hit, difficulties in accessing high-quality, disaggregated health data limited the effectiveness of pandemic response across the country, as well as healthcare delivery beyond the pandemic-specific response.”

Existing databases such as the Canadian Cancer Registry could benefit from better coordination with other large health-care databases, the report said.

IDENTIFYING PRIORITIES IN DATA COLLECTION

The strategy, released Tuesday, narrowed their focus down to a few key priorities, with the help of patients and families.

The first priority is to improve the efficiency and quality of data capture in order to speed up the process while also maintaining guidelines and standards.

The second priority is to make sure that there are better links between older data and more modern data, in order to create a seamless picture of the changing pattern of trends in cancer statistics and cancer treatments both over time and within a specific patients’ cancer journey. This data should be accessible and clearly linked so that patients and health-care professionals can better track it.

It should also be more clear how patients and health-care professionals can gain access to broader data sets, with more centralized hubs for linking people to the pertinent information, the strategy said.

The third priority is to fill in the gaps that improving data collection will expose, and make that data accessible for analysis.

Authors explained that this third priority includes more research on “social determinants of health”, as well as better collection of patient experiences and outcomes and better data tracking survivorship, demographics, risk factors and palliative care.

The strategy noted that key to achieving these priorities will be engagement with and support for data systems collection led by First Nations, Inuit and Metis communities.

“As exposed by the pandemic, high-quality, disaggregated data is needed to understand the impact of health issues such as COVID-19 or cancer on First Nations, Inuit and Metis communities,” the report stated.

It added that the majority of data regarding the health care of these communities are held by outside stewards, such as the government or health organizations, and that communities need to be given clear and open access to their own health data.

A cancer strategy for Canada thus needs to facilitate Indigenous-led data collection and reporting, authors wrote, in order to help address health equity gaps that persist.

Authors highlighted several existing Indigenous-led data efforts, including the Mik’maw of Nova Scotia’s health registry that links to administrative health data sets to create population health reports for their communities, and collaborations between provinces and Indigenous organizations to share health data.

A BETTER ROADMAP

Among the recommendations that the strategy makes is for the collection of cancer data to encompass more stages of the disease, noting that there are “undermeasured aspects.”These areas where there isn’t enough data include the process before definitive diagnosis, after treatment and during end-of-life care.

Being able to record better demographic information while maintaining patient privacy is also a key aspect, according to the report, as there are gaps in our understanding of which groups are disproportionately affected by cancer or not.

Because there are so many aspects to cancer data collection, another key part will be creating the platforms, infrastructure and educational materials to host this data and connect others to relevant data.

“A knowledge resource should be developed that provides information on how researchers and cancer data uses can access cancer-relevant data holdings,” the strategy stated.

And across all of these efforts, the voices of patients and caregivers need to be considered throughout, authors stressed.

“Fulfilling the goals identified in the cancer data strategy will be a team effort,” Dr. Craig Earle, CEO of the Canadian Partnership Against Cancer, said in the release. “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 that benefits all people in Canada and is positioned to respond to future challenges.”