A Johns Hopkins study published in the journal Clinical Trials sought to investigate this disparity by recruiting a more diverse pool of participants for a study on gout. For this, the team compared eight methods-four electronic and four traditional methods-for recruitment and noticed trends in the demographics of respondents. The study’s co-author Stephen Juraschek, MD, PhD explains, “Black Americans are under-represented in clinical trials—something I’m reminded of every time I counsel Black patients using data from largely white adults. Electronic medical records hold tremendous promise to offer patients with relevant conditions the opportunity to participate in clinical trials. However, the impact of electronic-based recruitment methods on participant demographics was unknown.”
Study Results
Juraschek and his team recruited through active patient portals, as well as indirect methods such as mailers and social media ads. The results of recruitment showed two-thirds of Black participants responded to paper advertisements, as many did not even have patient portals, despite their records being electronic. This proves that there is an “overdependence” on digital methods, as well as an eagerness for participation. “These findings also demonstrate the importance of a range of recruitment approaches to enroll a representative study population.”
Black People Often Have Worse Outcomes
Representation in clinical trials is crucial to finding the best outcomes for various ethnic groups. This is seen in patterns of diseases that are less prominent within the Black community that Black people are still more likely to die from. Black women are less likely to be diagnosed with breast cancer than white women but are more likely to die from it. Researchers seek to close the gap, but there is not enough research to study why this is. Similarly, more melanin in the skin prevents fewer cases of melanoma, but when it finally is diagnosed it’s often diagnosed at a later, deadlier stage. A major flaw to research is that doctors learn from guides that only show white skin. Many guides advise to look for a spot that is brown, tan, or red in color, but this is not helpful for someone with darker skin. Also, looking for black moles is not effective for a Black person who already naturally has them. Without adequate representation, fewer diagnostic photos are available for individuals with darker skin, and there isn’t adequate insight that could catch diseases in enough time to provide medical intervention.
Black people and clinical trials have a complicated history
US history is fraught with examples of mistreatment against people of color, and because of this, Black people are less likely to participate in clinical studies, which could fix the gap in health disparities. According to Inger Burnett-Zeigler, PhD, and associate professor at Northwestern University, “There is a deeply embedded mistrust of medical research in the African-American community. Burnett-Ziegler continues, “The Tuskegee Syphilis Study is one of the most commonly referenced historical events contributing to medical mistrust. The Black men who participated in this study were never provided with informed consent, the study went on far longer than initially anticipated, and when treatment became available it was not offered to them.” This study involved 600 Black men-399 with syphilis and 201 without. They were told that they were suffering from “bad blood,” and treatment was withheld from them, despite the study leading to the discovery of penicillin as a cure. The men signed on for 6 months, believing that they’d be given exams, food, and burial insurance. The study stretched on for 40 years, affecting the lives of the men, as well as their families. Burnett-Ziegler also mentions Henrietta Lacks, whose DNA led to cancer treatment advancements and the polio vaccine. “Ms. Lacks’s biodata was taken without her knowledge or consent and the profit gained from the scientific developments were not shared with her family.” “Combined, these instances and others have led to significant concern that researchers may not be forthcoming about the purposes of the research and fear that the information may either be used against them or has the potential to cause them harm.” She also explains that the lack of Black representation with clinicians and those who conduct the research only increases the mistrust. This is a never-ending cycle that begets further disparities and study participation.
Underserved Communities Lack Access to Technology
From the study, researchers gathered that even though Black patients had electronic files like white patients, many did not have an active portal. One reason for this could be accessibility. Pew research shows that Black families are less likely to have internet access than white, Hispanic, or Asian families. This information, as well as the trends that show Black men have more severe gout than other races, confirm the need for more effective communication tools. Overreliance on technology does not benefit Black people who are eager to participate. However, the knowledge that came out of Johns Hopkins research study proves to be a step forward in creating equity for communities that may be hit harder by various illnesses.
