Researchers recently reported widely varying levels of trust in medical researchers among racial and ethnic minority groups.1
Investigators analyzed 1,121 patients with idiopathic dilated cardiomyopathy. The level of genomic-sequencing knowledge was lower among Black and Hispanic participants vs. white participants. Black participants expressed the lowest level of trust in researchers. A higher level of trust in researchers was associated with more genome-sequencing knowledge.
“Research findings that are not representative of the entire population perpetuate disadvantages to minoritized groups,” says Kathleen M. Akgün, MD, MS, director of the medical ICU at VA Connecticut Health Care System. “Intentional partnerships with communities from racial and ethnic groups otherwise underrepresented in study design is crucial to conducting research in the modern era.”
Community members can advise the research team of messaging and perceptions that might undermine investigators’ ability to successfully recruit participants from diverse racial and ethnic backgrounds. A lack of trust in medical research results in many people declining to participate in clinical trials. “It can also lead to lack of confidence in research results or uptake of available treatment, furthering health inequities,” says Emmelyn Kim, MA, MPH, MJ, CHRC, vice president of research compliance and privacy officer at The Feinstein Institutes for Medical Research in Manhasset, NY.
To address this, Kim says researchers should intentionally use an inclusive approach when they plan, design, and implement trials. “Researchers and staff should be representative of the community they are studying to develop trust,” Kim adds.
Research staff can educate communities about institutional review boards or ethics committees that review research at institutions to ensure the protection of the rights, safety, and welfare of participants. “Ideally, the process should be collaborative. Communication with participants should be ongoing,” Kim suggests.
When conducting a prior study, Kim sent out newsletters to participants in their preferred language. The newsletters covered general updates on the study’s progress, what participants could expect for future research visits, and information on the research team and community events. “This way, they could stay engaged and connect their contributions to larger goals,” Kim explains.
Investigators also maintained a regular presence in community settings. This allowed a more nuanced look at community priorities and challenges through a cultural lens. For example, in working with Asian communities, researchers had to better understand family, linguistic, and cultural dynamics to implement effective interventions. “This also informs development of future research, and fosters continued participation from the community,” Kim offers.
REFERENCE
1. Ni H, Jordan E, Cao J, et al. Knowledge of genome sequencing and trust in medical researchers among patients of different racial and ethnic groups with idiopathic dilated cardiomyopathy. JAMA Cardiol 2023;8:33-42.
Research findings that are not representative of the entire population perpetuate disadvantages to minoritized groups. Community members can advise research teams about messaging and perceptions that might undermine investigators’ ability to successfully recruit participants from diverse racial and ethnic backgrounds. A lack of trust in medical research results in many people declining to participate in clinical trials.
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