How to Recruit Diverse Patient Populations in Clinical Research

Trial Better: A Clinical Trials Podcast

Fabian, tell us a little bit about yourself and your experience.

I’m Colombian, but I was raised in northern Virginia. I got a bilingual medical training and moved on to research after my residency. I soon realized I wasn’t keen on the monotony of regular medical practice. I ended up moving into clinical trials and research and have been in the industry ever since.

You’re a key member of the SCRS’s Diversity Awareness Program. Can you tell us about your history with the program?

SCRS started this program because there was a need and continues to be a need to not just raise awareness, but to do something about the lack of diverse populations that participate in clinical trials. When I heard about the idea for SCRS to focus on improving diversity, I knew that I had to be involved.

What are the most important lessons you’ve learned from your participation in SCRS’s Diversity Awareness Program?

When it comes to pharma sponsors of all sizes and CROs, there was a lack of awareness of the issue of diversity. Many people I spoke to did not know about the FDASIA (Safety and Innovation Act) Section 907, which states the importance of diversity in clinical research. I knew it was important to increase awareness of this policy, even among sponsors who I wasn’t working with, because I recognized its importance and potential to change clinical trials.

What can happen when sites are greedy with their information or don’t share amongst themselves the strategies they’ve utilized to improve diversity?

There’s no point in having “gold nuggets” of information if they aren’t shared. The reason we do clinical trials is to improve medicine and one day we or someone we care about may need that drug. So if we’re successful at a task, we need to share what we’ve learned so other people can take something away from our successes and our failures. Passing on those gold nuggets is critical to improving our work overall.

Can you tell us a little bit about the FDA Snapshots website?

This website tells you what drug was recently approved and breaks down the demographics of the participants. What we can take away from this information is that if the medication was not tested on a diverse population, it may not work on every single person. And if it doesn’t work, we haven’t done our due diligence or been good scientists. This is useful because it gives us an idea of which populations we need to do a better job at targeting next time around.

What can other sites do to improve the diversity of the populations they’re enrolling?

Look out the window of your office, look at people in the stores, and go and understand the community that’s around you. If you aren’t seeing a reflection of that population in your patients, then there’s a disconnect that’s fixed by getting to know your neighbors and community. Meeting church leaders and business owners is a great place to start. It’s more challenging during COVID, but as businesses open up, you can go and safely introduce yourself.

How can sites adapt during COVID-19 to ensure they’re still making their presence known in their communities?

Still having outdoor signage to let people know you’re there is important. Because we can’t go out in the community much, we’re utilizing social media like Facebook Live to talk and engage with people in the community. We don’t want to bore them, so we connect with them by providing them with useful information on top of sharing what research we’re working on. This allows us to maintain a presence so that community members know we’re still here and ready to help.

What does it really mean to have culturally competent staff at your site?

Cultural competency and being aware of the nuances of different cultures is important so you don’t offend or lose anyone. I was vision screening a Vietnamese patient who didn’t know how to pronounce certain letters of the US alphabet used in the vision chart, because those letters weren’t used in her language, and shame on me for not knowing that.

We need to understand what works or doesn’t work for each individual. This will help ensure they’re comfortable to engage in the study.

What considerations should sites keep in mind when developing effective communications or marketing strategy to reach the patients in their communities?

It’s important to know that not everyone has insurance or legal status in some communities. If you want these patients to participate, tell them they don’t need to worry about the insurance and that you’ll never share their personal information with ICE or the police. It’s critical to let them know they’re in a safe environment. Transparency on the site’s end is key because it can help patients let their guard down and even encourage their family or other members of their communities to participate.

Tell us about your site and the successful (or unsuccessful) strategies you’ve implemented to make sure your patients are representative of your community.

My first study was a pediatric study. I took all of my advertising money and put it into a bus campaign because I assumed all kids rode the bus. The ads ran for four months and I got three calls, none of which were from actual patients. I realized I needed to do a better job of finding the right patients. So instead, I went to daycares, talked to the parents, and started to make the right connections.

If we don’t really understand our patient populations and where we can find them, it’s not going to work. It’s critical that we work on that understanding because we don’t want to waste time and efforts; we want to be good stewards of the sponsors we’re working with and be considerate of spending the marketing dollars appropriately.

Tell everybody a little bit about your advocacy for health literacy and your TV show.

I’ve always wanted to promote health literacy. The terminology and acronyms that we don’t think twice about can be confusing for people outside the industry – and not just that, but also for people from outside the country or culture.

To accomplish my goal of educating the community, we started the Emerson Diversity Health Foundation. It’s designed to provide community outreach and education awareness. We partnered with sponsors to create a TV show, “Tu Salud Tu Familia” (Your Health Your Family), that’s been on for a year and a half and is now Emmy-nominated. It airs every Saturday morning and we are joined by elected officials, thought leaders from industry organizations, and patients who help us explore a health topic in simple terms. We reach 50,000 people live, and our social media presence has helped us expand our reach all across the country even though we’re a local show.

Again, the success of this doesn’t just benefit me, it benefits everyone. An educated patient knows the value of healthcare and research and knows where to get access to these important resources.

Watch Tu Salud Tu Familia on YouTube (English subtitles are available) or follow the show on Facebook, Instagram, and Twitter.