'So little information': Study finds significant absence of data on cancer in Black communities

Chemotherapy is administered to a cancer patient via intravenous drip at Duke Cancer Center in Durham, N.C., on Thursday, Sept. 5, 2013. THE CANADIAN PRESS/AP-Gerry Broome

A significant lack of research on cancer in Black communities in Canada is hurting the population, and data urgently needs to be collected in order to improve the health-care system and patient outcomes, according to a new study.

While the U.S. has long established cancer outcomes are often worse in Black people, Canada is failing to even gather a base understanding of the experiences of racialized people in health care, study authors told CTVNews.ca.

Researchers from the University of Ottawa conducted a meta-analysis of medical literature to assess the landscape of cancer research in Black communities in Canada, which involved examining whether gaps and disparities were being addressed.

The study found there is no data for Black communities on the 20 most common types of cancer in Canada.

And these results weren’t surprising, said Elisabeth Dromer, a PhD student at the University’s School of Psychology and one of the lead authors of the study, in an interview with CTVNews.ca Wednesday.

“Canada has a history of ‘colourblindness’, whether that is in society or in research,” she said. Within research, that means data on populations is not divided by race and people are not asked about their race during research studies, she explained.

Dromer adds the results of studies often group all non-white people together, without recognizing differences between groups and different needs or experiences.

“In that context, where we don’t collect data…it’s not surprising that we have so little information,” she said.

GAPS NEED TO BE IDENTIFIED

Particularly in 2023, in the shadow of the pandemic, the continued approach of not looking at race in health care is of great concern, as it prevents issues and barriers to care from being quantified, which affects patients, said Jude Mary Cénat, an associate professor at the school of psychology and the lead author of the study, in an interview with CTVNews.ca Wednesday.

It is well established that racialized people were more affected by COVID-19 in Canada and dealt with a higher burden of infection. Widespread screening delays and gaps in health care particularly and disproportionately affected Black people.

According to Black Health Alliance, this is due to systemic racism within the health-care system and due to decades-long neglect of neighbourhoods where more racialized people and immigrants live.

Dromer says disparities around breast cancer survival rates in Black people is an example of a gap that needs to be identified in Canada with data. In the U.S., Black women are screened earlier due to data that shows they are 40 per cent more likely to die of breast cancer than white women.

Some doctors are leading campaigns in Canada to encourage a similar reduction in screening age for Black people. However, the lack of data around breast cancer outcomes in Canada makes it more difficult for these initiatives to launch, she said.

Elisabeth Dromer (right), is a PhD student at the University of Ottawa's School of Psychology and co-authored the study. Jude Mary Cénat (left) is an associate professor at the school of psychology and the lead author of the study. (Supplied)

“There is this inequality, this injustice, where Black women are not being screened early like they should be,” Dromer said.

The study also notes that two in five Canadians will be diagnosed with cancer in their lifetimes, and one in four will die from the disease.

Other information the U.S. has found includes Black Americans are 50 to 90 per cent more likely to be diagnosed with pancreatic cancer than other Americans. There are no studies in Canada that include a sample of Black individuals when examining pancreatic cancer.

However, studies the review examined did find Black Canadians experience a lower quality of health care and are less likely to receive screenings, including screenings for cervical cancer.

Cénat said in Canada, there is a concern from some that collecting data could reinforce racism in the health-care system.

But this isn’t true, as when a Black person enters the health-care system, providers see them as Black, so it’s odd that data collection practices would ignore this fact, he said.

“They know about your skin colour because they see you. Without race-based data, we cannot develop policies which are racially adapted, culturally adapted to people,” he said.

NEED FOR CULTURALLY-RELEVANT CARE

Due to historical and ongoing discrimination within the health-care system, many racialized communities mistrust the system and within Black communities in particular, there can be stigma around discussing cancer, Dr. Mojola Omole, a Toronto-based surgical oncologist told CTVNews.ca last month.

Misinformation online, along with the health-care system not targeting specific groups for screening, or making it easy for questions to be answered, creates barriers to care, she said.

Omole says culturally relevant care involves creating advertising around screening that includes people of multiple races, or how cancer presents on darker skin tones.

Guidance is needed from people from Black communities to pursue research and data collection, so that providers know how to approach race in a way that helps patients rather than harms them, said Cénat.

“It is something that is urgent because it’s about the lives of Black communities, and mortality, and how we can remove racial discrimination from the health system,” he said.