Canada has promise in supporting clinical trial diversity in local and global studies. Some 23% of its 8.4 million residents were born elsewhere (in countries led by India, China, and the Philippines), according to the 2021 census.{1}This figure is forecast to rise to as much as 30% of Canada’s population by 2036.{2} Canada’s “open-door” immigration policy has also led to the fastest growing population among the G7 countries, which also include France, Germany, Italy, Japan, the United Kingdom, and the United States.{3}
“These unique demographics present a golden opportunity to enhance the diversity of clinical trial participants and hence the quality of data from these trials,” according to Munaza Jamil, Faculty Instructor at McMaster University. “However, immigrants are currently believed to account for less than 2% of participants in Canadian studies. The next step is to understand barriers to study participation by Canada’s diverse residents.”
Jamil describes a government-funded initiative with N2 Canada, a national nonprofit clinical research alliance, to hold a community consultation with recent immigrants late last year. She chairs the N2 Public Engagement Committee, which received a Canadian Institutes of Health Research grant for the community consultation.
“Our outreach revealed that while recruitment efforts often focus on directing patients to websites and portals, recent immigrants may lack trust in websites,” Jamil notes. “Instead, they would prefer to hear about research face-to-face from trusted people in familiar settings. In addition, immigrants have a variety of lived experience, typically coming from countries with privatized healthcare—a sharp contrast to the universal healthcare provided for all citizens in Canada. As a result, they may mistrust physician motivations for becoming involved in clinical research, thinking that [the physician] will be paid extra [for performing research], which is often not the case.”
“We were surprised to learn that many immigrants were comfortable with the concept of clinical research, despite having arrived relatively recently in Canada,” says Jamil. “However, many lacked awareness and education about the safeguards and ethical oversight that are in place to protect patients in clinical research. There were also questions about the use of placebo and the likelihood of adverse events. Addressing these issues and questions could go a long way to improve immigrant involvement in Canadian studies.”
Enhancing Diversity in Clinical Trials: Canada’s Promise
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With more than 200 languages reported as mother tongues in Canada,{4} language barriers are also common—in fact, many trials exclude non-English speakers.
“There are various initiatives under way within academic groups, such as piloting the use of certified translators during informed consent discussions and developing questionnaires in languages other than English,” notes Jamil. “Adding study staff from diverse populations can help mitigate language barriers. Even beyond these barriers, issues in communication with study staff may arise due to the fact that many cultures emphasize the entire family unit’s role in healthcare decision-making. Enabling broader participation of family members and caregivers as part of the patient’s circle of care could help increase transparency and patient confidence.”
Next steps are to develop recommendations and actionable plans that can be implemented to resolve barriers for diverse populations.
“We would like to encourage other study teams to hold similar community consultations, and hope that the ‘do it yourself’ toolkit of templates we are developing will support these efforts,” says Jamil. “We are focusing initially on templates to support community outreach and public engagement, as well as multi-language and culturally appropriate study materials. Our goal is for other study teams to carry out successful research within underserved communities and to partner with primary care physicians in community settings—ones who can be trusted mediators in this relationship intended to advance clinical research.”
References
- https://www12.statcan.gc.ca/census-recensement/2021/as-sa/fogs-spg/page.cfm?lang=E&topic=9&dguid=2021A000011124#
- https://www.canada.ca/en/immigration-refugees-citizenship/news/2022/12/canada-welcomes-historic-number-of-newcomers-in-2022.html#
- https://www.immigration.ca/open-door-immigration-policies-make-canada-the-fastest-growing-g7-country/
- https://environicsanalytics.com/resources/blogs/ea-blog/2022/08/17/census-2021-canadas-linguistic-diversity#:~:text=Over%20200%20different%20mother%20tongues&text=According%20to%20the%202021%20Census,)%20and%20Spanish%20(539%2C000)
Edited by Jill Dawson
