By Laura Onyeneho | Defender Network | Word In Black
(WIB) – Black people have historically been underrepresented in clinical trial participation in the United States, and researchers and medical professionals are looking for solutions to the problem.
The Center for Information and Study on Clinical Research Participation (CISPCRP), hosted its Journey to Better Health-Aware For All event at Houston Community College to address challenges through a panel discussion and exhibits that provided information and resources on clinical trials and research.
Clinical trials for the most part involve the voluntary participation of individuals to evaluate medical products such as vaccines, medication or devices for safety and effectiveness.
The crucial part of the process is to ensure that people from diverse backgrounds participate to advance health equity and reduce health disparities. The event featured local clinical trial participants, healthcare professionals and exhibiting organizations that offered free onsite health screenings.
“The goal of this event is to create awareness and educate people about clinical trials and how the community can be involved,” said Bridget Chapital, founder and director of Hypothesis Haven. “Underrepresented groups like the Black community simply don’t trust these trials due to historical references like the Tuskegee Experiment, and the withholding of treatments, but things are much different now.”
People of color don’t want to listen to a talking head giving them research. We have to build trust with the community and meet them where they are.CASSANDRA HARRIS, HEALTH EDUCATION MANAGER AT MD ANDERSON
Dr. Dominique Guinn is a professor at Texas Southern University. In November 2016, she was diagnosed with acute lymphocytic leukemia (ALL), a type of cancer of the blood and bone marrow. She said she participated in clinical trials because it was about survival.
“I was diagnosed with Philadelphia chromosome-positive (Ph+ ALL), a more aggressive form of the disease,” she said. “I began treatment at MD Anderson Cancer Center and was introduced to clinical trials that were approved to treat Ph+ ALL. No one forced me to do it. I had a choice. I was informed of my rights, the risks and benefits of the study. There are safeguards to protect our people during research.”
Black patients account for only 5% of clinical trial participants in the United States, while white patients make up the vast majority.
Cassandra Harris, health education manager at MD Anderson, said one of the biggest challenges to participating in clinical trials is getting to the location. Typical trials require patients to frequently travel to central sites for assessments and monitoring, which can eliminate people with limited disposable income, family obligations and few transportations options.
“We need to broaden where clinical research is conducted for easy access,” Harris said. “People of color don’t want to listen to a talking head giving them research. We have to build trust with the community and meet them where they are.”
Other solutions to increase diversity in clinical trials include:
- Be intentional with trial designs and include underrepresented people who might benefit from the studies.
- Challenge assumptions that underrepresented groups don’t want to participate.
- Improve recruitment strategies so people from underrepresented populations can see themselves.
Stat Box: U.S. Food and Drug Administration (FDA) 2018 Drug Trial Snapshots
- Whites make up 67% of the U.S. population, but are 83% of research participants.
- Black/African Americans make up 13.4% of the U.S. population, but only 5% of trial participants.
- Hispanic/Latinos represent 18.1% of the U.S. population, but less than 1% of trial participants.