NEWS Mental Health News Electronic Recruitment Causes Racial Disparities in Clinical Trials, Study Finds By Tonya Russell Tonya Russell Tonya Russell is a Philadelphia-based journalist with a passion for mental health, wellness, and culture. When she isn't writing, she's training for a marathon or riding horses. Learn about our editorial process Updated on October 28, 2020 Fact checked Verywell Mind content is rigorously reviewed by a team of qualified and experienced fact checkers. Fact checkers review articles for factual accuracy, relevance, and timeliness. We rely on the most current and reputable sources, which are cited in the text and listed at the bottom of each article. Content is fact checked after it has been edited and before publication. Learn more. by Sean Blackburn Fact checked by Sean Blackburn LinkedIn Sean is a fact-checker and researcher with experience in sociology, field research, and data analytics. Learn about our editorial process Share Tweet Email Print Marco Gebber / Getty Images Key Takeaways Clinical trials have historically low participation from Black people.A gout study discovered that overreliance on electronic recruitment causes disparities in diversity. Remedying the technology gap for Black patients can lead to increased study participation. A key, but often overlooked, challenge faced by medical researchers during clinical trials is a stark lack of diversity of participants. The historically low participation of Black people can have consequences on the results and overall effectiveness of the treatment in question. 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. Stephen Juraschek, MD, PhD All patients have the right to be offered medical therapies informed by studies that represent them. — Stephen Juraschek, MD, PhD 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. Double-Blind Studies in Research 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.” Inger Burnett-Ziegler, PhD There is a deeply embedded mistrust of medical research in the African-American community. — Inger Burnett-Ziegler, PhD 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. What This Means for You Racial and ethnic diversity is critical to the accuracy of the clinical trial process. If the data only reflects the physiology of white individuals then any potentially negative effects that a new drug may have on Black people could be overlooked. If you are a person of color, your participation in clinical trials could be instrumental in established safe and effective treatments for everyone. Racial Disparities Lead to Poor Mental Health Care for Black Americans 8 Sources Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Miller HN, Charleston J, Wu B, et al. Use of electronic recruitment methods in a clinical trial of adults with gout [published online ahead of print, 2020 Sep 15]. Clin Trials. 2020;1740774520956969. doi:10.1177/1740774520956969 NIH SEER. Cancer of the Breast (Female) - Cancer Stat Facts. LaBerge GS, Duvall E, Grasmick Z, et al. Recent advances in studies of skin color and skin cancer. Yale J Biol Med. 2020;93(1):69-80. Melanoma Warning Signs and Images. The Skin Cancer Foundation. Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010;21(3):879-897. doi:10.1353/hpu.0.0323 CDC. Tuskegee Study - Timeline. Johns Hopkins Medicine. The Legacy of Henrietta Lacks. Pew Research Center. Demographics of Social Media Users and Adoption in the United States. By Tonya Russell Tonya Russell is a Philadelphia-based journalist with a passion for mental health, wellness, and culture. When she isn't writing, she's training for a marathon or riding horses. See Our Editorial Process Meet Our Review Board Share Feedback Was this page helpful? Thanks for your feedback! What is your feedback? 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