Survey seeks black Nova Scotia cancer survivors to fill data gaps

A Dalhousie University researcher is looking for Black cancer survivors in Nova Scotia to participate in a voluntary study.

Joy Chiekwe is a master’s student working with Nova Scotia Health in an exercise lab at Victoria General Hospital’s QEII Health Sciences Center for cancer patients and survivors.

“Over the past three years we have run exercise programs outside of Victoria General as well as online since COVID hit and through these over the past few years we have probably (had) over 300 attendees, and of those attendees, only about one or two were — or identified as — black,” Chiekwe said in a Monday phone interview.

“My goal is to increase that and then also because in Canada the Canadian Cancer Society doesn’t discriminate between race or ethnicity when they put their cancer incidences into the big network, so without this valuable data, we’re not too sure which populations are being diagnosed at what rate, and that’s what we’re targeting – the right populations at the right rate.

Chiekwe said researchers could miss a lot of people who are overlooked or simply not represented in the data.

His team isn’t sure why that might be the case, as it appears only Canada doesn’t provide the breakdown by ethnicity, Chiekwe said.

“The United States does. Overseas they record it, individual programs will flag it, but it’s not widely reported, so there might be some missing data and unless you have access to every study or note of the doctor, it is quite difficult to say how many people are diagnosed, so it is more of an oversight by the Government of Canada, I am told.

With better data and a clearer picture of how the African Nova Scotian community is affected by cancer, the researcher hopes to see how to improve overall quality of life after a cancer diagnosis.

“Based on research in the United States and abroad, black people are dying at higher rates than their white counterparts, so if we miss those people in the data, we miss opportunities to limit the disparity there. low,” Chiekwe said.

The online survey is now online via this link.

“My online survey will be open until the first week of February, and then from there I’ll do interviews and stuff to get more in-depth answers to questions and kind of understand the whole story versus to yes- or no-questions online,” Chiekwe said.

After the investigation is closed, her lab will be open “forever”, she said. So getting as many people involved as possible would be great.

About 20 people had signed up as of the start of this week, but because the number of black people diagnosed with cancer is not known, there is no target number for survey participants.

“But obviously the more responses the better,” Chiekwe said.

“It’s an anonymous survey, so a lot of people have a certain mistrust of the healthcare system, but if they know their information is completely anonymous and no one will ever be identified after they complete the survey, that’s probably the most important thing – that they trust the researchers.

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