Stories of Advancing Diversity and Equity in Clinical Research
An Inside Look from Sites NOW: Diversity in Motion
We all understand why the representation of diverse populations in trials is critical to ensuring health equity, accurate data, and patient safety. However, knowing the right ways to engage underrepresented communities remains a challenge for many sites and industry partners. Fortunately, we have seen great strides to break the mold to ensure patients from all backgrounds have informed and equitable access to clinical research.
The January Sites NOW discussion explored stories and best practices from site leaders who are building trust in their communities and exceeding diverse enrollment goals in their trials. The panel members included representatives from various backgrounds with unique stories of how they have impacted the patients they work with. Plus, hear inspirational stories as well as actionable advice on how to build trust and access to diverse communities for your clinical trials. Let’s take a deep dive into how clinical research sites can successfully increase diversity, equity and inclusion in their trials.
Strategies to Make Connections in the Community
Ana Marquez, Chief Diversity Officer for Flourish Research, led her team to become a top global enroller for a study by focusing on building relationships with consulates and community clinics for underserved populations. Her team accomplished this by taking a different approach, like going into small markets and communities in order talk to the community directly. “Get creative and really think about where your target audience is,” she said.
It’s not always easy to go out and talk to people we don’t know. That’s why it’s important to find the right person that is motivated and comfortable with talking to strangers. Marquez also mentioned it’s extremely helpful to hire people that look like the community you want to attract.
Through Flourish’s community outreach, they met a patient with end stage pulmonary fibrosis. “He didn’t know about clinical research,” said Marquez. “If we would not have been out in the community making these connections, he would have not learned about his options.” He was quickly connected to a transplant hospital where he was able to get a new set of lungs, and has been doing well for nearly 7 years.
Preparing for Inclusivity and Accessibility
Eden Stein, Executive Director, Patient Insights & Engagement at Centricity Research, shared a story about a patient living in California that was diagnosed with primary membranous nephropathy. His doctors were discussing dialysis and next steps when he started researching online and found out about clinical trials.
Stein said the patient was eligible for the trial out of their Arizona site, so they coordinated transportation across state lines. Fortunately, they already had a Spanish ICF and Spanish-speaking staff to increase accessibility for the Spanish speaking population.
By taking practical steps ahead of time to make sure language barriers don’t stand in the way of enrolling patients in trials, sites running these studies can make a real difference in the lives of those who are affected by debilitating conditions.
One common misconception is that you cannot consent a patient if the PI does not speak their language. However, Ana Marquez stated that any employee that speaks the language can consent a patient as long as it is documented adequately.
“We really try to do whatever we can ahead of time to decrease barriers for patients that are not English speaking.” Stein also noted her employees speak 27 different languages across their 45 sites to help break down any language barriers. “Planning ahead to intentionally increase accessibility for these populations is incredibly important. The patient was able to join the study at our site, and was with us for six months while a site that was closer to his home got started. We were able to delay dialysis – a huge change of life for this patient.”
Training a Diverse & Inclusive Workforce
Dr. Fabian Sandoval, President & CEO of Emerson Clinical Research Institute (ECRI), said his organization has been focused on diversity since the very beginning. They’ve been successful in increasing diversity within their therapeutic areas, while also expanding their reach through TV shows and social media initiatives. Currently, they reach over half a million people every Saturday with plans to expand their TV show across the country.
However, it wasn’t always easy. Dr. Sandoval mentioned it was an uphill struggle to gain traction with their TV show and social media for the first two years. Now, they have established rapport with their communities and are focused on building a diverse workforce.
Recently, ECRI developed an in-person and virtual internship program in partnership with a local university. The program teaches students the value of becoming a study coordinator and principal investigator while learning the history of clinical research as well as practical understandings of EDCs, patient consent, community outreach, and the FDA. Once complete, the students can apply for a longer internship or job.
Dr. Sandoval is even helping his staff learn basic Spanish so they can better communicate and understand their Spanish-speaking patients. “I tell them it’s never too late to learn another language,” he commented.
Flourish Research also developed a Diversity Workstream, which was broken down into two subgroups. One of the groups deals with diversity and inclusion in the workplace because people want to share their stories, they want to be celebrated and it’s important to understand their cultural background. “It’s two different things that we’re dealing with – patient diversity and also diversity and inclusion in our in our workforce.”
Mohammad Millwalla, CEO of DM Clinical Research shared that “diversity has become a mission, not only from the industry standpoint but also internally.” With more than 600 employees, DM Clinical has created a staff community that is 74% diverse – and that’s just the starting point of their diversity initiatives.
The Value of Brand Ambassadors
Last year, DM Clinical Research had a study that hoped to enroll 1,000 diverse participants. The organization knew that just advertising is not going to make it happen, and they needed to do community outreach. During their outreach at multiple health fairs, they found an amazing individual named JR, who was African American. JR decided to become an ambassador for DM Clinical Research and suggested they join him at his ballroom dancing classes. JR then led a lunch and learn with the DM Clinical team sharing information about clinical trials where they enrolled 17 out of the 23 attendees. “JR has helped us make different videos for better awareness of inclusion and diversity for the African American community, and that has really served as well,” added Millwalla.
They then duplicated this strategy in other locations, which were all a success. “What we learned from that idea was that if you want diversity, then you’ve got to listen to the people, let them lead, and let and help them operationalize their story and their idea.”
Although the ambassador program was started in 2020, it didn’t really take off until they had established relationships with key ambassadors throughout their regions and communities. Their ambassador program features an interactive community-building app where ambassadors can communicate with one another internally and externally.
Taking the First Step
It’s important to keep in mind not all sites may have the infrastructure or resources to do community outreach. How can sites take the first step to enable diversity and inclusion within their organizations and trials? First, do intel in your communities. Know your community demographics so your enrollment can reflect the availability of different participant groups in your area.
Your staff can be your champions. Have them reach out to their friends, family, and acquaintances and educate them about clinical research, and ask them to be involved in some way. Remember it’s not just about being a research institution – it’s also about being a health advocate. Clinical trials aren’t just about finding new treatments; they’re also about giving patients hope and improving their quality of life.
Sites can also reach out to organizations like Latinos in Clinical Research or Black Women in Clinical Research that can help provide ideas and strategies for better community engagement. Work with local physicians. Sponsors and CROs can also appoint a diversity ambassador or liaison that can train sites, provide funding and help them break into new communities.
By creating a space for diverse voices to be heard, we can learn from each other and identify ways to improve. Eden Stein’s organization, Centricity Research, created a diversity advisory council to talk about what their community does, how they feel about clinical research and break down some of those stigmas.
“We need to do a better job with defining what diversity is; it’s not just diversity, it’s also inclusion,” said Marquez. It is through initiatives like these that we will be able to create a more equitable research environment and improve patient experiences worldwide. Join us at the annual Diversity Site Solutions Summit as we share more resources to advance diversity, equity, and inclusion in the clinical research industry.
The Sites NOW program is designed to provide a platform for discussing stories and solutions for site success. Throughout the one-hour session, panel members discuss hot topics impacting the clinical research industry and best practices that organizations can use to prepare. Sites NOW is a space for all of us – researchers and practitioners alike – to come together and share our thoughts on how we can enable greater site success and sustainability. Everything discussed during the program informs further research down the line in white papers, articles and sessions at upcoming Summits. Register for the next Sites NOW and watch the meeting recording below.
