Zahra Bhimani is a public health research professional based in Toronto.
Over the course of the pandemic, we have seen deep inequalities rise to the surface. The acknowledgement of these disparities has led to the push for race-based data collection and other policy measures aimed at reducing inequality. Sociodemographic data reveal that racialized, marginalized and low-income communities have been most affected by COVID-19, and Toronto Public Health reports that non-white residents make up 52 per cent of the population but 82 per cent of COVID-19 cases in the city.
Now, amid the second wave, these inequalities continue to persist in the health system. This prompts the question: Are we doing all we can to learn how health outcomes can be improved for those most affected by this pandemic?
To date, more than $275 million has been invested to enhance Canada’s capacity in research and development, as part of Canada’s COVID-19 research response. Now more than ever, research is one of the most powerful tools we have for improving health outcomes. But before we can attain answers, we need to address institutional barriers within clinical research.
Canada’s clinical research response to studying patients with COVID-19 and related treatments must be representative and inclusive of racially marginalized populations across Canada. The Canadian Institutes of Health Research (CIHR) recently released a statement committed to fostering a more “equitable, diverse and inclusive research-funding system,” noting that its predominant focus to date has been on sex and gender diversity.
The homogeneity of clinical trial participants has long been recognized as both an ethical and scientific issue; relying on data that may not be generalizable (but may be considered as such) is problematic. Taking action that will result in tangible change is important, and the time to act is now. The current pandemic offers an opportunity to address this problem by reducing disparities in health outcomes across the country, but that depends on organizations that fund Canadian health research adopting system-wide policy solutions:
Increase transparency of funding decisions by enabling public involvement
First and foremost, the Canadian health research-funding system should consider enabling demographically representative public participation in its funding decisions. Public involvement is imperative to increase transparency and accountability in government decision-making. Just as recent demand for greater citizen engagement in matters that affect the health outcomes of Canadians has been met with patient-oriented research strategies, a demographically representative sample of the Canadian public should become a mandated requirement when decisions that fund health research take place. Public representatives drawing from lived experience would be able to judge research proposals by the quality of their equity, diversity and inclusion strategies. In the early stages of the COVID-19 pandemic, when critical policies were being made about patients (such as long-term care facilities and visitation rights), patient and public voices were largely left out of the decision-making. The second wave offers an opportunity to make policy decisions transparent and inclusive.
Require equitable inclusion of racially marginalized populations in clinical research
While researchers may have the willingness to improve the diversity of clinical trials, they have to consider many important barriers, such as historical abuses. One particularly successful means for building trust, educating patients and raising awareness is through community‐based participatory research. Trial sponsors and research teams are forging new paths to diversity by obtaining the support of trusted community leaders. Given our history, building the trust of Indigenous and Black communities in Canada will be particularly critical, and our research-funding system should make this a requirement for all clinical researchers seeking funding.
Address disparities in clinical trial access
All funded research should require that research sites have the resources and personnel to simplify research and translate consent documents to languages spoken by local populations. Though translation services are often available, their use is not mandated by our funding system, which limits trial participation from patients who speak little or no English or French. Low income and education levels are also barriers to increased participation in clinical research. Requiring research teams to include professionals trained and educated on the potential barriers that racially marginalized populations face, who share cultural and language similarities with patients and who use simplified language to explain their research, will help overcome the barriers to including low-income and racially marginalized populations in research. This solution would not only be a step closer toward inclusive science, but also toward health equity and consequently, improved health outcomes.
As we strive as a country to tackle the second wave of the pandemic, and as CIHR develops a new strategic plan for 2021-25 Canada’s health research-funding community must take a close look at current research practices that may be exacerbating inequalities in clinical research, and act swiftly to enact these recommendations.
