January 12, 2023
Speaking Patients’ Language - Perla Nunes
Community Outreach Director at Greater GiftGuest
This week we welcome Perla Nunes, community outreach director at Greater Gift. Ecuadorian-born Perla is passionate about diversity – with specific focus on the Hispanic community. During this episode, she explains how Greater Gift is encouraging a new generation of leaders from diverse backgrounds through its scholarship program and why bilingual staff are key to build trust among patients.
“I always ask if studies are offered in Spanish. The response I always get is, 'yes, everything has been translated to Spanish, IRB approved, and they have everything set up in Spanish.' So my follow up question is: 'The enrollment sites, do they have bilingual staff?'"
HANNAH LIPPITT: Hello and welcome to the Totally Clinical podcast brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big-time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and, most importantly, the people benefiting from clinical research. So, tune in, settle back and don't touch that dial. It's time to get Totally Clinical.
HANNAH LIPPITT: A few months back, I was delighted to speak with Lilly Skok Bunch, executive director at that time of nonprofit organization Greater Gift. Lilly discussed the patient-orientated mission of showing gratitude to clinical trial participants. In this follow-up episode I'm speaking with Perla Nunes, community outreach director at Greater Gift. Perla has 30 years in pre-clinical and clinical research experience and was hired by Greater Gift specifically to tackle the diversity and inclusivity conversation.
Welcome to the podcast, Perla. I know that Greater Gift has grown from more than the celebration program to inclusivity of underrepresented populations. Could you explain how this came about and a bit about your background?
PERLA NUNES: I was born in Ecuador, my family came to the United States when I was six years old, and I'm the first child in the family to go to college and I majored in biology and when I came out of college with a biology degree, there wasn't much that could be done except work in the lab. So that's what I did. I worked in preclinical research at Hoffmann-La Roche in Nutley, New Jersey, and then my family and I moved to North Carolina, where I worked at the Cannon Research Center, part of Atrium Health. I'm a people person and it was time for me to make that move to where I was going to be able to work with people in clinical research and use the Spanish that I had never really used in the preclinical research aspect of my life. So, I went to work at Duke University. They were doing a community-engaged research project where it was a registered biorepository, where they wanted to make sure that the communities that lived in Cabarrus County were being represented in the Murdock study. And they needed somebody who knew research and was bilingual so we can enroll people that only spoke Spanish, because the study was offered in Spanish. I started out as a clinical research coordinator, and I knew that that was my passion. I went on to be project leader, overseeing community outreach, not just for recruiting people, for studies, but also for retention purposes in these studies. So, I came to work at Greater Gift at a time where you know, COVID-19 was happening in the world, and everybody was listening and hearing about clinical research in the news every day. And Black and Brown people were dying three times more than anybody else, but yet Black and Brown people were not participating – were not involved in the clinical research that was being done to find a vaccine to combat this COVID-19. So Lilly Skok Bunch is a great visionary and she thought: what a great opportunity for Greater Gift to because we have been a celebration program, but now we can also make sure that we do that community outreach work so that underrepresented communities can be represented in clinical research and going out to communities, leveraging the fact that Greater Gift is a nonprofit so that other nonprofits will open the doors for us and let us speak to their communities and talk to them about what is clinical research, why it's important to be represented in clinical research. Listening to people, acknowledging what they have to say, validating the fact that there has been bad research done and that they have concerns. And then trying to bring awareness about what changes have been done in clinical research because of the bad research that has been done.
HANNAH LIPPITT: I can see that your experience and background must be a real asset when it comes to highlighting this diversity gap. What are Greater Gift’s main tactics and goals to help address this?
PERLA NUNES: Because we are a nonprofit and part of Greater Gift’s celebration program is through the Feeding America sites, which are all over the United States. That is like the first in that we have with other nonprofit organization to try to reach out to those Feeding America sites that we have worked with and letting them have information that they can share with the people that come to the Feeding America sites about what is clinical research, what are the steps involved in clinical research? Why is it important to participate in clinical research? What are the myths? What are the facts? What are the pros? What are the cons? So, trying to get that information out. And because they know that these facilities where they go, they will be more keen to pick up a flier or read it if that organization is displaying it rather than us who they don't know from anywhere, handing them a flyer.
You know, when I came to work at Greater Gift, we did a Facebook Live in Spanish with key stakeholders in the Winston-Salem area, where Greater Gift is headquartered and we had different people from the community: somebody from the health center, a pastor, somebody who owned a restaurant in Winston-Salem and had COVID and was very sick in the hospital with it. And we just had an open conversation about why people were hesitant about the vaccine. What are some of the misconceptions? How can we talk about this? Let's talk about how the vaccine happened, why they found vaccines so quickly. Operation Warp speed. Let's talk about these things. Let's have these open conversations. And that really helps a lot because, people were asking about things that they saw in social media, there was a lot of misinformation out there and it was just, “Let's talk about it.” Discuss why do you think that the TikTok you saw is evidence of what really will happen versus a physician who was on our Facebook Live and could talk about it. So, just having that, I think people felt comfortable doing that and we just have to keep talking about it. People have to keep seeing us, you know, different events or opportunities where we can have information. We're more of an advocacy group. We want to make sure people have the information at hand and know what questions to ask if somebody approaches them to participate in a clinical trial, because then they can make that decision whether they should participate or not.
HANNAH LIPPITT: Yeah, information really is power - being able to understand what they're getting themselves into and you know, basically getting their information from the best sources rather than TikTok, of course. Now we hear a lot about diversity in the industry, but why from both a personal and a scientific viewpoint, do you believe it's so important?
PERLA NUNES: During COVID and then after George Floyd and Black Lives Matter movement, I think every company, every organization was establishing diversity, equity and inclusion. A position was created of somebody that would do this at these different companies, it was a lot of talk about it and which is great. Now it's two years later and one of the things that I keep saying is that, “I want to see it.” I mean, I want to hold people accountable. And I want to say, “OK, what, where's the data? What has changed? How are things better now?” In April of 2022, the FDA has a draft guidance out about having diversity recruitment plans in all research projects that are proposed for all clinical trials. And it'll be good to see what happens with this draft. I heard this recently from someone that said a guidance is not a mandate. And so that really triggered me to say, You're right. You know? So, I'm hoping that the draft guidance will hold people accountable when they do put in a recruitment plan, that they're going to include a certain percent diversity in their trials and how they're going to achieve that, and that there are metrics in place so that we can see that data. But why does it matter? For me, on a personal level, representation in clinical trials matters because I'm a Hispanic woman and I want to make sure that when I become ill and I go to the doctor, I am given a medication that they have done clinical research using Hispanics on. Not, when I become sick, I go to the doctor and the doctor gives me the best medicine that there is out there right now for my illness, I take it, it doesn't work on me, I'm still not feeling good, I'm out of the money for that medication, I've lost time taking this medication that hasn't worked on me, so the doctor now tries a different medication. And this can go on and for three or four medications until we find one that will work on me. But if I had participated in the clinical research years before to find a medication that would work on Hispanics as well, I would be able to take that medication when I become ill. To me, that is my personal viewpoint. And I guess it's also scientific viewpoint, right? I mean, we don't all react the same way. There is a lot of evidence out there. There's data to show that certain medications won't work on certain ethnic and racial backgrounds so it is important for every one of us to participate.
HANNAH LIPPITT: Earlier you discussed some of the misinformation and disinformation online, and we know that vaccine hesitancy, it can be a very sensitive subject. What do you think some of the challenges could be in terms of tackling this topic?
PERLA NUNES: It's very interesting that vaccine hesitancy came about during the COVID-19 vaccine, because I can talk for Hispanic families. When your child is born, you take them to the doctor, the doctor says, “They need this vaccine, that vaccine,” the child gets it. As adults, whatever vaccine or doctor says that we need, we take. And then COVID-19 happened, and people were hesitant about it. And I think social media had a lot to do with it. All this different misinformation out there and the fact that the vaccine was developed so quickly. So, I think a lot of education and awareness needs to go into place and talk to people about, you know, Operation Warp Speed – everybody was working together to find a vaccine as quickly as possible. We know that it takes a long time for clinical research, for something to come to market and how come this vaccine happened so quickly? Well, because the whole world was trying to find a vaccine that would work and the technologies that were developed for these vaccines already existed. So, it's just a matter of explaining to people taking the time to understand that people do have misconceptions, that people do have some misinformation, but just taking the time to talk to people in layman's terms and make sure that they understand why this happened, why we got a vaccine so quick.
HANNAH LIPPITT: So, what kind of response have you actually had so far from diverse communities and what have you learned?
PERLA NUNES: Actually, it's been quite positive. It works well with smaller groups than when you give a discussion to a larger group. But talking to small groups, one-on-one has worked great, just going over this information, like I just said before, about why this vaccine was developed so quick. And, you know, I participated in the Janssen COVID vaccine trial – I went in December of 2020 – and I didn't know if I was getting the placebo or the actual vaccine, but, you know, I had a picture taken, I posted it on my social media, I sent it to all my friends. I said, “Look, if I'm going to advocate for clinical research, I'm going to participate. And I want you to know that I enrolled in the study today. I don't know if I got the vaccine. I don't know if I got the placebo. But I want you to follow my trajectory and make sure that my journey is one that if I have any side effects or anything, I'll let you know.” And it was interesting because in March of 2021, after emergency use happened, everyone was unblinded to find, so we found out if we had actually received the vaccine or the placebo. And I was pleasantly surprised to find out that I had actually received the vaccine back in December of 2020. It was interesting to see that a lot of people, when you have that one-on-one conversation or small group conversation that they were like, “You know what, I think I will consider it.” And actually, one of the people that we had in the Facebook Live she was hesitant about getting the vaccine and she went and read more about it and she actually went and got the vaccine.
So, I think people just need to have more information and it has to come from the right sources and just having that information for them to look at, to go and read, to ask their doctors or somebody that they feel comfortable about it.
HANNAH LIPPITT: And it’s not just about the vaccine. It’s also about how clinical trials are run and the suspicion some communities can have – especially when there’s no one who “looks like them”, so to speak. To help to tackle this, I know that you have a number of scholarships for minority students in clinical research. Could you explain more about these?
PERLA NUNES: We have been working with a lot of other nonprofit organizations. So, your free clinics, your federally qualified clinics, community health centers, and just having the information. The other thing that we found is that a lot of people – especially underrepresented communities they feel more comfortable when the person that is talking to them about a specific study or enrolling them in a specific study looks and talks like them. So, we at Greater Gift in 2020, we started the Mary Hofmann Murphy scholarship for diverse leaders in clinical research. And that has gone very well. Our first scholarship was established with Wake Forest for their master's in clinical research program. The 2020 recipient was an African American male, the 2021 recipient was an African American female, and we're getting ready to celebrate the 2022 recipient. We also did a scholarship with the Hispanic League in Winston-Salem. The Hispanic League works with the Latino community in Forsyth County or that area and a scholarship was established for a student that was going to Winston-Salem State University, a Hispanic student. She received a scholarship as a freshman and as a sophomore and our plan is to continue her journey in college until she graduates college. And most recently, we established a scholarship with Durham Technical Community College – they offer an associate degree in clinical research – and we're also talking to two other universities in North Carolina that offer clinical research degrees. And these are all for minority students who are pursuing higher education. So that is our hope – that we can help those leaders in clinical research look like the underrepresented participants that were trying to bring awareness about clinical research.
HANNAH LIPPITT: One of the reasons you started working for Greater Gift was your Hispanic heritage….
PERLA NUNES: Because I'm Hispanic, I'm very passionate about the Latino community. Makes sense, right? Many times, I always ask if studies are offered in Spanish. The response I always get is, “Yes, everything has been translated to Spanish, IRB approved, you know, they have everything set up in Spanish.” So, my follow up question to that is: “The enrollment sites, do they have bilingual staff?”
HANNAH LIPPITT: And what was their answer?
PERLA NUNES: Either: “We don't know,” or “No.” And I'm like: “Well, if you don't know, you need to find out because if you don't have bilingual staff, then you cannot enroll people in Spanish.” And if they say, “No,” I'm like, "Well, then don't even say that you can offer this study in Spanish. Because you're trying to build trust with this community. You're trying to make them feel comfortable about enrolling in a clinical trial and you're having a translator. So, there's a third person involved in the trial and it's just not going to work.” You need to have that intimate conversation with the coordinator. And enrollment that should take an hour will now take two hours. It's just not going to work. So, we have to be mindful of that. You need bilingual staff if you're going to offer a study in Spanish.
HANNAH LIPPITT: And that's your dose of Totally Clinical. You can download our podcast on Apple, Spotify and Google. Please subscribe and leave a rating and review so more people can find the show. See you on your next visit and remember to bring your friends. Thanks for listening! Goodbye!