Though it’s common knowledge that there is a lack of diversity in clinical trials, a glance at the actual statistics on the subject is still quite startling. A recent study published in THE LANCET Regional Health found that of 4.76 million trial participants in the U.S., 79.7% were White; 10% were Black; 6% were Hispanic/Latino; 1% were Asian; and fewer than 1% were American Indian.
These stark disparities exist even in diseases such as prostate and lung cancers, which disproportionately affect Black men; and triple negative breast cancer, which has three times the mortality rate in Black women than in White women. Disparities are also seen among older adults, individuals with disabilities, pregnant women and members of the LGBTQIA+ communities enrolled in clinical trials.
These disparities result in glaring gaps in our understanding of how medications work across diverse populations. Understanding the pharmacogenomic variability of therapies is essential for the health and safety of anyone who may potentially benefit from that drug. Without this data, we will continue to lack lifesaving treatments for many patients.
“The [breast cancer] drugs that are standard of care weren’t adequately tested on Black bodies, so they’re not working for us,” Ricki Fairley, founder and chief executive officer of TOUCH, the Black Breast Cancer Alliance, explains. “We need to advance the science and put more Black women into trials. It’s a dire situation for us.”
While many organizations are seeking to improve the equity of clinical trials, they often struggle with breaking through to communities who have been under supported when it comes to healthcare. That’s one area where health education can be beneficial. “For the African-American community, education is critical,” Fairley says. “We have a lot of history of earned mistrust with medical science, so there’s a lack of knowledge and a lot of misunderstanding about how the science works, as well as a fear of the unknown.”
Participating in a trial can impact a patient’s entire family and support system. That’s why it’s important not just to educate patients but also equip them with the ability to defend their decision to participate in a trial to their family and friends. “The more we can normalize trials and show people across the general public that it’s an innovative option and sometimes is the best option, the more people will be comfortable with it,” Chelsey Fix, MPH, says. Fix is the associate director of research and advocacy at the GBS|CIDP Foundation International, an advocacy organization focused on rare peripheral nerve conditions.
Supporting Healthcare Providers
Clinical trial education isn’t just needed for patients and their families. TOUCH investigated barriers to trial participation and found that doctors often don’t invite Black women to enroll in trials. This data made it clear that many healthcare providers have competency and cultural gaps that need to be addressed to improve equity in trial participation.
To that end, organizations like TOUCH and GBS|CIDP Foundation International serve as trusted resources to healthcare providers to help them have informed conversations with their patients about trial options. Their work demonstrates the power of collective knowledge to transform people’s lives.
The GBS|CIDP Foundation’s Be the Bridge program enables healthcare providers to bridge ongoing care for their patients with Guillain-Barre syndrome, chronic inflammatory demyelinating polyneuropathy, multifocal motor neuropathy or related conditions. The site offers consult services, diagnosis and treatment guidelines, and research grant applications. Patients can also visit the site to access medical center of excellence referrals, webinars, as well as virtual and in-person support groups.
Likewise, TOUCH brings together patients, survivors, advocacy organizations, healthcare professionals, researchers and pharmaceutical companies to work collectively toward eradicating Black breast cancer. Fairley and her team created the #WhenWeTrial movement to mobilize the Black community to participate in clinical trial research. By offering education from the voice of Black breast cancer patients, free consultations and access to doctors, they are helping to demystify clinical trials.
Education serves as a building block to gain clinical trial interest and participation, as well as developing trusting relationships that are so crucial to overcoming health inequities. “When you educate, you elevate people,” Fairley says. “You give them respect and help them understand something they don't know. You overcome their fear of the unknown with basic information from the voice of a Black Breastie. That’s a gift, and that builds trust instantly.”
“Education is the foundation of trust,” Fix says. “In the rare disease community we serve, patients are often traumatized after years of misdiagnosis. A physician who is well informed with research going on for their disease can be a source of trust and make people feel more at ease.”
GBS|CIDP Foundation International also works extensively with healthcare providers in rural areas to educate them about available care options, including clinical trials. “In regions where there is limited access to treatment regimens, there is a need for awareness about ways to make life better for patients,” Fix says. “Part of what we do is help healthcare providers in these areas get connected with sought-after experts. By sharing resources and building better relationships, we can have a strong healthcare system.”
PlatformQ Health works in collaboration with TOUCH, GBS|CIDP Foundation International and many other advocacy groups to produce digital education for patients and providers. PlatformQ Health and TOUCH recently produced several programs for patients and providers that serve to overcome common myths about clinical trials.
For example, one pervasive misconception is that a clinical trial is a last resort. These days, that is not the case — particularly in the oncology space where patients often have access to clinical trials for a plethora of novel therapeutics. Typically, patients can participate in trials at any stage of their cancer journey.
Similarly, patients often voice concerns about being a “guinea pig.” “That’s why we need to increase awareness about the different phases of trials and how much testing occurs before a trial begins on people,” Carole Drexel, PhD, vice president of Patient Education for PlatformQ Health, says. “A trial may not just be the best option but often better quality of care, more attention, and more consistent access to medication than with the standard of care.”
Educational Program Outcomes
In late 2022, GBS|CIDP Foundation International and PlatformQ Health produced a digital education program focused on helping patients and their families learn about what trials are and how they work. The program resulted in 13,778 total engagements, with 70% of participants reporting that after the session they felt more familiar with understanding clinical trials in their disease. Many patients wrote in afterwards, sharing their newfound interest in trial participation.
Even so, identifying the right trial and navigating through its complexities can still be a difficult proposition. To help patients and their families through this process, PlatformQ created the Cancer Clinical Trials Resource Hub, which offers a wealth of articles and additional support tools.
To learn more about the role of education in increasing equity of clinical trials, watch our webinar: Empowering Patients and Providers through Medical Education.
For further learning, read these previous articles from Tariqa Ackbarali, MS, PhD:
Improving Health Equity Through Tethered Education
Advancing the Patient's Role in CME/CE
Tariqa Ackbarali is the senior medical director for oncology at PlatformQ Health. She has been in the CME industry for more than 12 years, primarily focused in the area of oncology/hematology. She earned her Doctor of Philosophy in health sciences from Nova Southeastern University and received both her B.S. majoring in psychology and minoring in biology and her M.S. in clinical psychology from Barry University. Prior to joining the Institute for Medical Education and Research (IMER) in 2009, she completed a practicum and internship at the Children’s Diagnostic and Treatment Center, a medical home setting providing counseling and testing services to children and parents. Dr. Ackbarali served the medical education industry at Rockpointe in 2012 and then PRIME Education in 2017 where she was responsible for oncology/hematology educational program growth, including execution of multiple quality improvement programs. Dr. Ackbarali continues her passion for creating tangible impact through education at PlatformQ Health, where she educates both clinical teams and patients/caregivers.