Blog written by Munaza Jamil, Chair, Public Engagement Committee, N2 Canada
Clinical trials play a pivotal role in advancing medical research and shaping the future of healthcare. However, for these trials to truly benefit everyone, diverse participation is essential. By including individuals from diverse backgrounds, including various racial, ethnic, socioeconomic, and geographic groups, clinical trials can provide more comprehensive insights into how treatments may affect different demographics, leading to more inclusive and effective healthcare outcomes for all.
Historically, clinical trials have lacked diverse representation in their study populations. Many studies, including Canadian ones, disproportionately overrepresent Caucasians, despite the diverse population of Canada. According to Statistics Canada, in 2021 almost a quarter of the population was composed of immigrants. Furthermore, recent population projections have determined that by 2041, immigrants will account for 34.0% of the total Canadian population. There are very limited studies focused on strategies to increase recruitment within this population, despite the understanding that immigrant populations have their own specific health concerns and disparities.
Recent efforts, however, are aiming to change this narrative. Organizations like the Canadian Institutes of Health Research (CIHR) are spearheading initiatives to promote diversity, inclusion, and equity within clinical trials.
Engaging the community to understand new immigrants’ experiences with clinical trials
In the summer of 2023, N2 Canada received a CIHR award to host a Café Scientifique. Cafes are funded events designed to facilitate knowledge sharing and foster open, respectful dialogues between the public and health research experts. These gatherings focus on discussing health-related issues of public interest and are specifically customized to address the unique needs of the community they engage with.
The focus of this Café Scientifique, led by the N2 Public Engagement Committee, was to bring together people with lived experience as new immigrants to Canada, to explore the challenges and barriers they faced in accessing and participating in clinical trials. This community consultation was held at a public community centre in Toronto, Ontario on October 5th, 2023.
The objectives of the Café Scientifique were to:
- Increase awareness and understanding of clinical trials within new immigrant communities.
- Enable the clinical trials community to develop effective materials to engage new immigrants in clinical trials.
- Increase understanding of the barriers that newcomers experience to participating in clinical trials.
- Create a model for future workshops to enable the clinical trial sector to host them within their community.
Insights from the new immigrant community on clinical trial participation
The discussion at the Café, led to valuable insights that can be considered for implementation in clinical research projects, aiming to enhance engagement and participation among immigrant communities. Every participant at the Café Scientifique event unanimously agreed that immigrants to Canada should actively engage in clinical trials. The hesitancy faced by many immigrants in engaging with clinical research and the strategies to address these concerns were highlighted in six key areas: accessibility, trust, cultural values, communication, transparency, and language.
Overall, event attendees found the Café session highly valuable in introducing and enhancing their understanding of clinical and research trials. Based on completed feedback forms, there is a strong desire for more events similar to these, where members of the public can engage with researchers and peers, establish connections, and engage in open dialogue.
By addressing the identified barriers and implementing strategies to enhance immigrant engagement, we can ensure more representative study populations and ultimately improve healthcare outcomes for all Canadians. We hope that our insights will inspire future research endeavors to engage diverse communities that are currently underrepresented and drive positive change in the Canadian research landscape.
You can read more about the findings from the Café Scientifique here: White Paper_Bridging the Gap