Observations and Trends in Clinical Trial Diversity
During the last year, we have all been doing our part to help combat the global pandemic. Covid-19 has drastically changed all of our lives and has spotlighted an ongoing issue within clinical research: ethnic and racial representation within all studies, but also the disproportionate impact of COVID-19 on the black community.
I have personally become more aware of the impact these disparities have on medical innovation and driven to find ways to help. In this blog, I share my insights from many webinars and events I’ve participated in, plus my own experiences.
Black Americans and COVID-19
In a high-profile story on ABC news, it was cited that Black Americans are 2.3 times more likely to die from COVID-19 compared to white Americans.
Just a few weeks ago, I attended a webinar hosted by Black Women in Clinical Research (BWICR) featuring speakers from Eli Lilly on Diversity in Clinical Trials and Emerging COVID Treatments. We know that Covid-19 is disproportionately impacting the Black community, and this session aimed to identify the reasons why. The presenters re-affirmed what we suspected: lack of knowledge and trust in the medical system, and clinical research.
Looking Back, to Look Ahead
In order to address the mistrust in the Black community we must acknowledge a darker time in clinical research history, the Tuskegee Syphilis Study and many other unethical studies performed. The impact of these studies has been a consistent reason for many in the Black community not to trust, or participate in clinical research (and rightfully so). So, what should be done about it? The speakers from Eli Lilly in the BWICR webinar suggested that we need to educate the community with messengers that look like them. We need advocates of color to be a voice and share information to improve healthcare in these underrepresented communities. There is a need for diverse research sites, and an increase of investigators of color. The industry needs to build diverse relationships with the communities they serve.
Creating Awareness of Clinical Trials Amongst Black Men
I also had the pleasure of attending the 2021 Prostate Cancer Foundation “Blue Jacket Fashion Show,” hosted by Janssen Pharmaceutical Companies. The fashion show is held yearly during fashion week to raise awareness for prostate cancer. Prostate cancer is almost 99% treatable when detected early, but there are often no symptoms in the early stages. Screening is vital for detection of this silent disease. Screening should begin around 45-55 years old, and 1:4 men are likely to be diagnosed with prostate cancer. There is a stigma associated with men being screened, and that puts their lives at risk.
During this presentation it was stated that Black men are twice as likely to die from prostate cancer, and a staggering 79% of Black men will be diagnosed with the disease. 57% of these men have a family history of prostate cancer, and they should begin screening at the age of 40. For many of these men, the prostate cancer diagnosis is their introduction to the medical system. Many of these men do not have trust in the medical system, and this mistrust correlates to a higher mortality rate.
Overcoming the Trust Gap in Clinical Research
The most common theme in many of the diversity webinars is the lack of trust and healthcare knowledge in underrepresented communities. During the SCRS SitesNow Diversity in Clinical Trials virtual event, we discussed these issues similarly from a sponsor and site’s perspective. Sites stated that Sponsors should begin including diversity requirements in the study protocol. Many of the sites stated that they would not feel additional burden if this was implemented in the initial onset. Sponsors should be cognizant of the geographical diversity of the sites that they choose. Sites are tasked with creating and ensuring culture sensitivity, credibility, and TRUST.
Many sites recognize the need for implementing a diverse staff, and having additional resources readily available to assist their patients. (i.e Bilingual nurse). Sites should understand and support their communities. A site not understanding where they sit in a community often results in missed diversity opportunities. Many people of color have built loyal relationships with their primary physicians, and do not wish to change their care. Allowing the support of non-clinical physicians can help remove some of these barriers to unlocking a diverse population.
The diversity of the workforce has a direct correlation with the patient population of a medical clinic. I have personally experienced bias when receiving medical care, and this is a known issue that extends beyond clinical research. Patients are more trusting when medical professionals look like them.
So, how do we close the professional diversity gap in clinical research? Danielle Coe, the founder and CEO of Black Women in Clinical Research (BWICR), developed this professional network as an answer to that question. BWICR’s mission to educate, empower, and support black women in the clinical research industry. Although this was the founding purpose, the group has expanded to support black men, and inspired other underrepresented minority groups to form similar coalitions. Education about opportunities within clinical research is vital to closing the diversity gap. Danielle believes that the sooner we introduce clinical research to our youth, the more likely they will want to purse a career in the field.
Greenphire Wants to Help
At Greenphire, our team works All In, For a Purpose, Solving Problems. Our solutions have been created to not only remove the burdens from sites and sponsors, but the patients themselves that are participating in clinical research. We believe that clinical trials should be representative of their intended populations and that once we’ve created a more diverse clinical trial participant pool, that logistical and financial obstacles shouldn’t cause them to drop out. Watch this video to learn more.
I ask you – with the industry conversation that being brought to the forefront today, what more can be done to improve trust, reduce barriers and create equitable access to healthcare today?
That should be our shared mission, and I look forward to working with you to see that become a reality.
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