A pair of assessments conducted by the American Society of Hematology (ASH) have helped identify roadblocks to improving diversity in clinical trials and elucidated the strategies ASH members use to advance diversity, equity and inclusion (DEI) in their own research.
The assessment of DEI barriers looked specifically at clinical trials in classical hematology, a term for noncancerous blood diseases, many of which are rare. The study recommends more engagement with patients who have lived experience of a disease; improved awareness of implicit bias and how it limits patient enrollment in trials; and broadening trial eligibility criteria.
“Engaging lived experience experts is especially key,” ASH’s director of scientific affairs Alice Kuaban, who led the study, said in a Dec. 9 release. “Patients want to be heard. They’re the experts on their own diseases and have a unique perspective to offer that could inform study design.”
To identify the barriers to improving diversity, Kuaban’s team, which included researchers from IQVIA and Novo Nordisk, surveyed 191 ASH members and then held five international focus group discussions with leaders from academia, industry, government and clinical research organizations, as well as patients, according to the release.
In the other study, a team led by pediatric hematologist Hope Wilson, M.D., of the University of Alabama at Birmingham’s Heersink School of Medicine, surveyed 774 ASH members about what they do to improve DEI in their work.
The vast majority of respondents (74%) said they had received no formal training or guidance on how to incorporate and enhance DEI in clinical research. Those who do work to improve diversity use a variety of tactics: 19% said they involve patients when planning studies, 21% reach out to community providers to increase trial awareness and encourage patient referrals, and 22% work with patient groups to share study details in a language that patients can understand.
The ASH is looking into using the findings in an educational platform to help investigators recruit diverse patient populations in their trials, according to the release.
“Increasing study cohort diversity helps foster research because there are unique lessons to be learned from different cohorts that can advance future studies down the line,” Kuaban said in the release. “ASH is drawing upon the results of these exercises to take steps to address these issues.”