Inclusive clinical trials enable more patients to benefit from therapies that can improve their quality of life. However, an under-representation of racial and ethnic minority groups in clinical trials has been, and continues to be, a major issue within the U.S. healthcare system.
“Disparities in clinical research participation are well documented and, like many other healthcare disparities, are a byproduct of systemic and institutional racism,” said LUNGevity Foundation Chief Health Equity Officer Jeanne Regnante. “The COVID-19 vaccine and treatment development have amplified the need for all communities to have the same opportunities to participate in research and benefit from new scientific advancements.”
To address this challenge, health care and community leaders at National Cancer Institute (NCI)-designated cancer centers, advocacy organizations such as LUNGevity Foundation and Stand Up To Cancer, and digital engagement specialists PlatformQ Health are collaborating to support more inclusive clinical research.
The collaboration will kick off with an expert panel discussion video on diversity in lung cancer trials to help patients gain insights into the value of clinical trials.
Interested in learning more about the collaboration? Check out our most recent press release.
Rethinking patient education
Half of all patients trust the advice of their doctor or specialist when it comes to clinical trial participation, yet often the processes for educating patients about the benefits of trials leave much to be desired.
Oncologists at leading research hospitals may have the opportunity to talk with their patients in-person about the advantages of clinical trials, but they’re only reaching potentially a dozen or so patients a day. And this leaves out a large swath of people who may benefit greatly from access to therapeutic trials. Statistically, people of color have lower cancer screening rates, higher incidents of financial stress around health care, and are less likely to have access to cancer clinicians who can introduce them to opportunities to participate.
Another challenge is clinicians’ lack of time to educate patients about clinical research. A recent study highlighted suboptimal interactions and information exchange between physicians and patients as a significant barrier to clinical trial enrollment. The researchers noted, “patients experienced one-sided, dismissed, or rushed conversations with physicians, resulting in feelings of alienation, pressure, coercion, and an absence of autonomy.”
Expanding access to highly respected specialists can help ensure that underrepresented populations have the same clinical trial opportunities. For example, the Diversity in Lung Cancer Clinical trials program will bring together renowned thoracic medical oncologist and clinical scientist Jhanelle Gray, MD; Associate Center Director of Community Outreach, Engagement, and Equity Susan Vadaparampil, PhD, MPH; and Director of Interventional Pulmonology Amit Tandon, MD from the Moffitt Cancer Center, along with a lung cancer patient who will share their clinical trial experience.
Expanding outreach exponentially
Finding patients who meet trial eligibility criteria is often a barrier to achieving recruitment goals. “It requires collaboration,” said Regnante. “Government agencies, pharmaceutical companies, cancer centers, patient organizations, and professional organizations are working together to engage representative populations, address more appropriate eligibility criteria in cancer trials, ensure we have culturally and linguistically appropriate information informed by community insights, and bring more clinical trials to the communities where diverse populations live.”
Recognized for cutting-edge cancer treatments and research, the 71 NCI-designated Cancer Centers around the country have leaders who are a trusted source of medical information, with a proven ability to reach underserved communities. The centers have developed models and tailored interventions to effectively reach vulnerable populations and maintain ongoing relationships with community partners and leaders. The centers’ community outreach directors are leaders in facilitating recruitment of diverse populations into clinical trials. Their strong ties to communities of color, as well as their connections to associations such as Lungevity Foundation, Stand Up To Cancer, and the Association of Community Cancer Centers, are helping to extend the reach of the program.
Incorporating patient voices
Involving previous trial participants can help with recruiting more diverse patients. To that end, research teams, community organizations, and patient advocacy groups can empower patients by introducing them to people who have been through the clinical trial process themselves. Hearing patient insights can make people feel more comfortable with opening up and asking questions. When patients talk to other patients, this helps to break down barriers — and brings hope to those who need it most.
Fostering digital engagement
When it comes to online education, engaging participants is a key factor in driving behavioral change, such as researching clinical studies or enrolling in a trial. Interactive polling can be used to encourage patients to share their stories. Likewise, collecting participant questions during registration and throughout online sessions can also help patients and their families become immersed in understanding the challenges and advantages of participating in clinical trials.
For the Diversity in Lung Cancer Trials program, PlatformQ Health will be following patients along their journey, sharing these outcomes with trusted lung cancer advocacy organizations. These metrics will guide stakeholders in improving outreach to underserved communities.
“What’s particularly exciting is that this program is highly scalable, and will be expanded across neurology, rare diseases, diabetes/cardiometabolic, as well as other oncology-related therapeutic areas,” said PlatformQ Health President and Chief Executive Officer Robert Rosenbloom. “This approach has the potential to move the needle in recruitment in clinical trials across America.”
Interested in learning more about our approach to improving diversity in clinical trial participation? Email us at firstname.lastname@example.org.