A study published in JAMA Oncology collected information from 230 clinical trials for the development of anticancer drugs, and the race or ethnicity of the participants was only reported in 63% of them.
The medical community has a pending situation with clinical trials and diversity. Research published in JAMA Oncology “Reporting Disparity and Racial Representation in Clinical Trials That Led to Cancer Drug Approvals from 2008 to 2018,” Questions Reporting and Representation of Racial/Ethnic Groups Used to Approval of Cancer Drugs by the US Food and Drug Administration.
“We would want the representation of trial participants to reflect the disease population being studied or the group that is intended to use the product being studied. So I think that, at a minimum, that's what we would strive for in terms of the composition of the study population," said Samantha Artiga, vice president of racial equity and health policy at the Kaiser Family Foundation.
During the McKinsey Digital Health Conference, conducted in early September, medical researchers outlined various strategies to address this problem of lack of ethnic data for clinical trials that subsequently lead to drug approval.
Data is the solution
Conference panelists recognized that data collection is one of the most necessary parts of solving the problem, however, the way this collection occurs and the reporting structure on ethnicity, income and other social determinants of health have ample room for improvement.
“Large data gaps remain, particularly by race and ethnicity, with a high proportion of unknown or missing data in all data sets. This is not something specific to clinical trial data, and there is a growing proportion of people who identify as multiracial, and that trend is only going to increase over time,” Artiga explained.
Through decentralized clinical trials, the scientific community has the opportunity to reach more patients and more areas. Thanks to the advancement of virtual monitoring technologies and tools, patient data can be captured from home. I think what's exciting is that (the pandemic) has accelerated things like telemedicine, remote clinical trials, decentralized trials," said Cassandra Hui, founder and CEO of Heal Mary.
In this way, decentralized trials that mix traditional testing techniques could be a viable solution.