How a community health center boosted cancer screening for its black and immigrant patients

This was a worrying trend, as research shows that delays in cancer screenings often lead to a later diagnosis and a higher risk of death.

“If the community is struggling, the answers lie within the community,” said Dr Onye Nnorom, who was a family doctor at the clinic at the time.

So in 2013, the center started contacting the community to find out why.

“One of the concerns that a number of patients mentioned was that they had not seen any data telling them how their own community was doing with regards to cancer deaths or cancer outcomes,” said Nnorom.

Other barriers have also been reported, including the stigma and fear surrounding cancer, language and cultural barriers, and the lack of education about cancer screening.

After listening to its patients, TAIBU created a working group to address patient concerns and improve its screening rates for breast, colorectal and cervical cancer.

Over a seven-year period, the clinic has exceeded provincial averages for these cancer screenings, said Nnorom, now an assistant professor at the University of Toronto’s Temerty School of Medicine.

Breast and colorectal cancer screening rates offered tripled from 2011 to 2018, while cervical cancer screening rates also improved. (In Ontario, cancer screening rates are reported as offered services rather than completed.)

TAIBU then conducted an additional audit, reviewing over 700 patient records for the year 2017-2018 to see if patients who were offered screening actually followed the tests. He found that 88 percent of mammograms, 83 percent of stool occult blood tests (FOBT), and 99 percent of Pap tests were done.

The results of the program were published this month in a study in the medical journal Canadian Family Physician.

Between 2011-2018, the breast, colorectal and cervical cancer screening rates offered by TAIBU increased from 17 to 72 percent, 18 to 87 percent and 59 to 70 percent respectively.

The center attributes its success to the use of an Afro-centric approach based on listening and prioritizing the community.

Staff developed a range of culturally sensitive materials – such as educational brochures featuring their own clinicians and diverse staff, provided information in different languages, asked community ambassadors to lead outreach efforts, and launched an extensive phone-based follow-up program, where staff took the time to explain and answer questions about testing.

Nnorom said they hope the study will provide other health care providers with ideas on how to approach the issue of cancer screening in non-white and immigrant communities, which tend to be under- screened for cancer.

“Unfortunately, in Canada, we don’t have very good data that tells us more about people’s race, ethnicity or culture or the different factors that affect their care and outcomes,” she declared.

“Screening guidelines may be different”

In Canada, data on race or ethnicity and cancer is not collected, although Nnorom and other doctors say it is needed to fill gaps in our health care system.

Such information could improve cancer prevention and treatment among blacks and ethnic groups in Canada, said Dr Mojola Omole, surgeon-oncologist at the Scarborough Health Network.

A striking example is evidenced by US data which shows significant disparities between black and white women when it comes to breast cancer, especially when it comes to mortality.

According to the American Cancer Society, black women in the United States have the highest breast cancer death rate, despite a lower incidence rate of the disease compared to white women.

Research in the US and UK also shows that black women tend to have a more aggressive form of breast cancer (triple negative breast cancer) and are often diagnosed at a younger age compared to white women.

Canadian screening guidelines for breast cancer vary from province to province, but often begin at age 50, unless the patient is at risk, has a family history of the disease or a known genetic mutation.

Collecting that data here could help inform – if not modify – our current screening guidelines in Canada, Omole said.

“I think our screening guidelines might be different because we know some data that black women present at an earlier stage,” she said. “So we may have to take a different approach. ”

Black women also face other challenges in cancer care, she said, such as a lack of images to show the difference in scars after reconstructive surgery on darker skin tones. or even access to wigs that match different hair textures, for patients who have hair loss after chemotherapy.

“All of these things are currently not being considered,” Omole said.

Improve awareness

Efforts are being made to increase awareness of the impact of cancer on people of color in Canada. In October, Women’s College Hospital in Toronto, in collaboration with The Olive Branch of Hope, launched a website, created by black women with breast cancer to help guide others on their journey.

Michelle Audoin is the founder of another effort called Uncovered: A Breast Recognition Project, an online resource and photo series that shares the experiences of black, Indigenous and colored women with breast cancer.

Audoin started the project after her own diagnosis, when she discovered there was a lack of information about the impact of cancer on women of color.

“It could be due to a lack of scar images like in my situation, misinformation about how radiation burns look on melanistic skin,” she said.

Women who shared their stories for the project encountered similar issues, she said.

“They want to see images like them, of black and brown bodies and their reconstructive scars. They want to have more data based on race. They also want to have support groups that reflect their cultural diversity,” Audoin said.

Francine Holness chose to share her story for the project, in hopes of raising awareness about some of the unique experiences women of color encounter.

Holness discovered a lump in her breast in October 2020, but due to the pandemic her diagnosis was delayed until January. She was then diagnosed with stage 4 metastatic breast cancer earlier this year.

At 43 and with no known history of breast cancer in her family, she had not started regular mammograms.

Holness had a lumpectomy earlier this year and had multiple rounds of radiation therapy, but the cancer has spread and chemotherapy is not an option. His doctors make him take palliative medication.

“I am dealing with my mortality,” said the mother of four. “I might be 10. We don’t know. They gave me two to seven.”

She is already talking to her two daughters about their risk of breast cancer and the importance of undergoing genetic testing and screening, she said, so she can prepare them for “what lies ahead.”

She says she also works hard to help them navigate the healthcare system as black women and hopes her story can help others as well.

For more stories about the experiences of black Canadians – from anti-black racism to success stories within the black community – check out Being Black in Canada, a CBC project black Canadians can be proud of. You can read more stories here.