The ongoing conversation regarding the imperative shift clinical trials must make towards inclusivity remains pertinent when it comes to Hispanic patients. Sites and sponsors alike continue to struggle to find ways to crack the code in engaging local Hispanic populations and prioritizing their inclusion in clinical research. Recognizing where the barriers exist and understanding how to engage Hispanic patients are crucial components to ending these discrepancies in research.
In honor of Hispanic Heritage Month, Inato’s Senior DE&I Growth Manager, Atira Goodwin broached this topic with Perla Nunes, Director of Outreach at the non-profit Greater Gift. Greater Gift’s mission is to celebrate all who are a part of clinical research by donating vaccines and food in participants’ honor and encouraging a future generation of diverse research leaders through their scholarship program. Born in Ecuador, this mission is close to Nunes’ heart as she voices the importance of working to bring Hispanic patients to research. Her conversation with Goodwin highlights where the current issues lie and how players in the industry can stand up and join efforts in dismantling the barriers.
Watch the full interview >
G: In your opinion, what does diversity, equity and inclusion look like in clinical research?
N: It looks like getting people involved, all people, from the ground up. They’ll say people are being invited to the table, that’s not enough. We need to invite people to design the table, to build the table. Only then will we be able to make sure that the research resonates with the communities that we are trying to engage in clinical research. I’m not just speaking about black or brown people, I'm talking about LGBT people, women, people of different socioeconomic status.
G: If you could share one recommendation for how sites can make the biggest impact in representation in clinical trials, what would that be?
N: Diversity in site staff. A lot of times people will be at ease speaking with someone that looks like them and speaks like them. The other [recommendation] is trying to be a part of the community. You start building that trust and people see that you are part of the community.
G: With regard to the Hispanic and Latinx populations in this country and representation of Hispanic and Latinx principal investigators, how does that impact willingness to participate within the communities?
N: We need more minority PIs for sure. What I have seen work well in the past is when a PI is recruiting for a specific study and they have a community presentation about their study. Can you imagine if there was a Hispanic PI who came and gave a presentation in Spanish? People could ask him or her specific questions about the study, about health; how great that would be? We had a Hispanic PI when I worked at Duke University and she came to Kannapolis for the day. It was great to be able to see people engage with her. People were like, “A doctor is coming to this presentation and she speaks my language. Let me ask her some questions.” It's just a matter of continuing to build that trust and engagement and showing them value.
G: What would you say are some of the major barriers of clinical trial participation within the Hispanic and Latinx communities that are currently not being addressed?
N: I love this question, I’m very passionate about it. I’m going to highlight three things that I’m always advocating for.
The study is offered in Spanish, there is Spanish informed consent, the flyers are in Spanish and I’ll say, “Do you have bilingual staff?” They say, “Oh no, we can get a translator.” That won’t work. We’re trying to build trust with this community, and we’re going to ask someone to come in and enroll in a study that a translator is going to have to be translating back and forth. So much is going to get lost in that translation, it’s a disservice. Translators are great in an office business, but to go through informed consent with a translator, a visit that was going to take an hour now takes two and a half hours. It just doesn’t work.
Another barrier that I think is a burden for the Hispanic community is how far [sites] are from the communities that they’re trying to enroll. Some of those sites offer Uber as an option but if you don't speak the language, you're not going to get in a car with someone that is going to take you to a site that is 45 minutes away. Then you have to navigate where you are, especially if the site is in the hospital system. Bringing the sites closer to where the Hispanic communities live is beneficial to all.
The other barrier that I see is the time when people can come in to enroll. A lot of people don't have the option of going in to enroll in the study between the 9 to 5 hours so being innovative by having enrollment hours in the evening or on the weekend helps out a lot.
One other big thing, also with the Hispanic community, is the fact that, for compensation, people are asked to give their social security number. A lot of the Hispanic community do not have a social security number so therefore they are not able to enroll. So here we've gone and we’ve built trust with the community, they understand clinical research, they are considering participating but then they don't have a social security number so they can't. There should be a way to enroll in studies without having to give a social security number. That might take some time but if people are allowed to waive compensation and still participate that should be an option.
G: We talked quite a bit about some of the barriers to clinical trial participation within the community, do you currently see any barriers to really understanding the breadth of involvement within the Hispanic community in terms of reporting? What could we do to better address our understanding and maybe the data collection around who is actively engaging?
N: I love this question because when I was with the Murdock study we had, for example, a thousand people that were Hispanic but when it came to race it was “other.” It was like, “Why are all Hispanics saying “other”?” I said, “Let me speak up, I'm Hispanic and I am not any of these. I am Ecuadorian. I am not a Pacific Islander.” There needs to be a better way for Hispanic people to identify with race. This is a topic that is being discussed, all these different groups are very much aware that there's a disconnect, that there needs to be a better way for Hispanics to identify race. If not, we're all going to keep selecting “other”. It’s a disservice to the Hispanic community because when funding happens we're not being represented. It's not right to ask us to pick.
G: Thank you for sharing your perspective, hopefully that will help influence consideration of developing new systems. Before we end, I just want to give you the opportunity to share some of your success stories and some of your interactions that are really engaging..
N: This is why I love this work because for me, it's more than work. It is very rewarding. Community engagement pulls at my heartstrings and I love people and the fact that I’m able to help people. When I was a coordinator, I would give people my phone number and just say, ”If you have any questions just feel free to reach out to me because I'm involved in this and that and I might be able to be a bridge for you.” It just builds those relationships and then from that relationship, they knew the pastor at their church. Then the church pastor invited me to come to one of their meetings and I spoke to their parish nurse. They invited me to come to their service and speak for five minutes about the study. It all works out and it takes time. I used to attend every event I was able to attend. I would bring my table and information and just be out there and talk to people. I remember there were some people that I’d talked to and I'd say, “Would you consider participating in clinical research?” Then this was like the tenth time this person had seen me at an event and she said, “My God you are really all about this aren't you? You know what? I want to listen to what you have to say today.” She listened to me and she knew that I wasn't just somebody that was showing up one time trying to recruit them. This person enrolled in the study and we are still friends today, we're Facebook friends and all. Just having that presence and people seeing that you are part of the community is so important.
Nunes’s stories display concrete examples of the impact dedicated community engagement can have on trial participants. Her passion for sharing these stories and speaking out about barriers Hispanic people face in trials pushes conversations like this forward, and brings inequities to light so that they can no longer be ignored in the industry.
To view the rest of Nunes and Goodwin’s conversation, click here and view the full video interview.