There is a growing recognition of the value in creating clinical trials that are more reflective of diverse populations, as this would advance knowledge and understanding, and ultimately translate into improved health outcomes.
“The ideal situation is for new drugs to be tested in the population in which they are eventually intended to be used,” says gastroenterologist Dr. Vipul Jairath, a Professor of Medicine at the Schulich School of Medicine and Dentistry at the University of Western Ontario.
Dr. Jairath notes that race and ethnicity can influence aspects of a person’s biology, such as predisposition to certain diseases and the effectiveness and safety of treatments.
Trust is a huge part of clinical research— Dr. Vipul Jairath
According to a report conducted by the U.S. Food and Drug Administration on the drug trials submitted between 2015 and 2019, 76 per cent of the participants involved in those trials were White, 11 per cent were Asian, 7 per cent were Black or African American, 1 per cent were Indigenous, and 5 per cent identified as other.
In Canada, the collection of socio-demographic data in the health sector, apart from age and sex, is very limited. A recent report from the Canadian Institute for Health Information proposed the development of standards for collecting race-based and Indigenous identity data in health care as a way to respond to health inequalities experienced by racialized groups and advance equity in the health sector.
Barriers to participation in medical research
Many barriers exist that prevent people from getting involved in medical research in the first place, says Dr. Jairath.
“It’s complicated and involves a lot of factors,” he says. For starters, people from racialized groups may be more likely to have lower socioeconomic status and may already have limited access to health care due to fewer health facilities and doctors in their neighbourhood. Their doctors may not have heard of relevant trials and are much less likely be operating as an intake centre for them, he adds.
Meanwhile, taking part in a trial requires a commitment that not everyone can fulfill. Most trials can involve financial and administrative burdens, from getting multiple tests and filling out forms, undergoing time-consuming medical procedures and interventions, as well as travel costs, including taking transit or paying steep hospital parking rates.
In addition, “trust is a huge part of clinical research,” says Dr. Jairath. “To offer a clinical trial as a potential treatment option, a patient has to trust that you’re offering this in their best interest.”
While the medical community is increasingly understanding that diversity, equity and inclusion (DEI) in clinical trials is important, we need systemic changes to move the needle, says Dr. Jairath. Health care providers, patients, regulators, government funders and the pharmaceutical industry all play an important role and share responsibility for promoting change. “Every stakeholder has to improve,” he says.
Medical schools are trying to broaden their reach and improve diversity. In 2018, the AFMC launched the Future of Admissions in Canada Think Tank (FACTT) to provide guidance to medical schools on how to structure admissions to improve diversity.
The Government of Canada is now actively encouraging diversity, equity, and inclusion in research participation.
Dr. Jairath says this topic is being discussed frequently in the medical community, which is a significant step. DEI in clinical trials is improving, he says, but it will take a while to see the positive benefits.
“It’s going in the right direction, but we have a long way to go.”
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