A Challenge to Black Millennials to Solve an Age-Old Healthcare Problem
If you’re Black in America, especially if you’re a Black healthcare provider, you know this story well – the infamous Tuskegee Study of Untreated Syphilis in the Negro Male. That period of time less than 100 years ago when the US Public Health Service unethically conducted a 40-year-long syphilis experiment on 600 hundred Black men. Enrolled under the guise of receiving treatment for “bad blood” and lured in by promises of free medical exams, meals, and burial insurance, they received no treatment whatsoever. When penicillin became the known drug of choice for syphilis treatment thirteen years after the start of the study, it made no difference for the sick men; for the next twenty-five years, penicillin was intentionally withheld.
Fast forward to the 21st century, and the Tuskegee syphilis experiment is frequently cited as the defining historical event that instilled healthcare mistrust in Black Americans and, to this day, prevents us from participating in clinical trials. Although this idea is misguided in many ways and oversimplified in others, it is derived from a true sentiment.
In today’s healthcare landscape where evidence-based medicine is king, clinical trial enrollment is more relevant than ever. After all, high quality clinical trials are the foundation of disease treatment. They inform our guidelines, our algorithms, and our protocols. Yet too often, we are left with trial results that are not completely generalizable to Black people. As a postgraduate fellow, I taught a drug information and literature evaluation course to 2nd year pharmacy students. An unfortunate “trick” I taught them was that when analyzing a study, the participant demographics can almost always be considered a study limitation. Black, Hispanic, and Native American populations will almost always be underrepresented in comparison to the real-world distribution of disease.
When I think about those students and my friends who are already healthcare professionals or will be soon, I am hopeful about the future of healthcare. I am especially inspired by Black millennials and our aptitude for developing unique solutions to complex problems.
So, I have a question and challenge for us: What can Black millennial healthcare providers do to increase minority clinical trial enrollment?
Here are a few of my initial thoughts:
1. Enhance the quality of online information about clinical trials. According to a poll by Research!America, half of African-American respondents claimed to get information about clinical trials online. This means the clinical trial information available on the Internet needs to be accurate, digestible, and informative. Equally as important, people need to be able to and want to access the information. Fortunately, millennials have tons of experience with making online content accessible and interesting.
2. Connect potential participants to satisfied participants and trustworthy providers. In a marketing approach to clinical trial recruitment, social proof is gold – word of mouth, testimonials, good or bad reports from peers. These all affect an individual’s willingness to take part in a clinical trial. For all demographics – including African-American respondents – trustworthiness and perceived competence of those leading clinical trials is of utmost importance. Young practitioners can refer quality participants in their own networks to trustworthy providers and find ways to link them to individuals who have participated in clinical trials before…
…without violating HIPAA. Hey, I did say it was a challenge 😆
3. Start in our own communities. Your families, Greek letter organizations, churches, and community groups are great places to build relationships and educate people about clinical trials. Offer a list of nearby trial sponsors (and give rides!). Lead a weekend workshop about clinical trials. Host a free seminar about the potential benefits of study enrollment. The resources are at our fingertips, and so is our audience.
These are just a few of my thoughts, but I’d love to find out what other ideas are out there and how people are already implementing them. What we can’t do is continue to wait for study sponsors to figure out how to connect with our communities. (How long have we been waiting already?) We can increase clinical trial awareness and enrollment in our own circles by utilizing our education, expertise, and creativity to improve the long-term health of our communities.
Megan Nichole is a public health pharmacist and professional health writer. Originally from South Carolina, she hopped one state over to Atlanta, Georgia where she resides with her fiancé and son. Megan is most fulfilled through learning, informing, and educating about public health topics, especially those that relate to medications. Her favorite way to do so is through freelance health writing and maintaining her own blog, Your Friendly Public Health Pharmacist.
Check out her latest posts on her website – megannichole.com.