Personal Investment Builds Trust for Diverse Populations in Clinical Trials
Episode

Lilly Bunch Executive Director at Greater Gift

Personal Investment Builds Trust for Diverse Populations in Clinical Trials

Brought to you by   | hosted by Joseph Kim

 

Improving diversity, inclusion, and equity in underrepresented communities requires a high-touch approach.

 

In this episode, executive director Lilly Bunch talks about how Greater Gift works hands-on with communities to build trust relationships and increase awareness around clinical research to improve their design and address health disparities in disease states. She discusses legislative and structural changes that impact patients’ participation and reimbursement. Lilly recognizes the value of technology for patient engagement but reiterates the importance of in-person, one-on-one social work with key influencers in underrepresented communities. Human connection increases trust, and through Greater Gift’s work, these communities can better access and utilize clinical research as a care option.

 

Tune in to learn more about what Greater Gift is doing for diversity and inclusion!

Personal Investment Builds Trust for Diverse Populations in Clinical Trials

About Lilly Bunch:

Lilly Skok Bunch is a 30-year veteran in the philanthropic sector and has dedicated her career to helping organizations, large and small, build capacity and increase impact. Lilly is a high-energy leader with a passion for building the fundraising capacity of organizations that make the world a better place. Her role at Greater Gift is a perfect convergence of her commitment to improved health, building organizational capacity, and philanthropy.

Before relocating to Winston-Salem with her husband Al, and son Sam, Lilly was appointed Interim President of the Culpeper Wellness Foundation (Culpeper, VA) and Executive Director of Helping Hands Clinic, a free medical clinic serving uninsured adults (Lenoir, NC). Lilly also served as the Vice President of External Relations and Development of Peace College (Raleigh, NC) and Alumnae Director of her alma mater, Hollins University (Roanoke, VA).

In addition to serving as Executive Director of Greater Gift, Lilly is Senior Counsel for Capital Development Services, a full-service fundraising consulting firm serving the Southeast since 1984.

 

Research Confidential_Lilly Bunch: Audio automatically transcribed by Sonix

Research Confidential_Lilly Bunch: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Joseph Kim:
Welcome to Clinical Research Confidential! On this show, we highlight and demystify the inner workings of this greatly misunderstood activity called clinical research. Now, why is clinical research important? Well, it’s the basis for nearly every modern remedy for sickness and a growing method to build trust and solutions meant to optimize health. But it’s not for the faint of heart. And so on this show, you’ll hear what it really takes to succeed in the clinical research game. I’m your host, Joseph Kim, and I’ve spent over 23 years in the clinical research industry, now serving as the chief strategy officer for ProofPilot. Get ready for some adventures as we look into the underbelly of clinical research.

Joseph Kim:
Hi, everyone. Welcome to Research Confidential. Today we’re going to talk about diversity with the fabulous Lilly Bunch, who is now the executive director of the Greater Gift. Lilly, welcome to the show.

Lilly Bunch:
Thanks, so happy to be here.

Joseph Kim:
Yeah, it’s great to have you here. So you have a long history in nonprofit work and other sort of social movements. Tell us a little bit about your history and how you ended up coming to Greater Gift, because that’s a funny story, too.

Lilly Bunch:
Yeah, well, I just really appreciate the opportunity to be here today. One of the things that I’ve loved about our relationship in particular is we sort of get down and dirty on these topics about how we want to see change in the research industry, and so this was a great opportunity for us to do that in a more public way and talk about some of the hopes and dreams we have for ensuring that we have equal representation in clinical research among especially racially diverse communities. So I, as you said, have a long history in the nonprofit sector in both higher ed and healthcare fundraising. And when I was running a free clinic in western North Carolina, I kept seeing in the newspaper advertisements for needing diabetic patients in clinical trials. And I thought, Well, I am a free clinic that has 1500 diabetic patients that don’t have access to health insurance and could A, have access to test strips and meters, if they participated in this trial, could have access to medication, could have access to an unlimited number of patient visits that they need to be controlled for the study. I wonder if there’s some there here, right? I wonder if there’s something that we could do. Never was able to connect with the company that was doing the clinical trials, but literally four years later met Jennifer Byrne, the former CEO of PMG Research and now CEO of Javara, who is passionate about exactly the same thing, met her in France after seeing her family on an airplane. Very long story, not her short as it should be, I became involved with Greater Gift, which is an organization that she, a nonprofit organization that she founded over 12 years ago with a passion for creating awareness of the critical role that clinical trial participants play, volunteers play in the process. I mean, her basic premise was that we as an industry do not do as good a job as we should in showing our gratitude to the volunteers without whom we could not do clinical trials, right? And so that has grown into what is Greater Gift’s current mission, which is to ensure, increase awareness of clinical research, especially among underrepresented populations, to ensure equity in clinical research. So that’s the work I’ve been focused on for the last two years, and here we are.

Joseph Kim:
Yeah, it’s fantastic. Yeah, we just had Jennifer on the show recently as well, so it’s great to, we didn’t even talk about Greater Gift because she’s got so much else to talk about. So it’s good to have you on here to like actually pay tribute to that vision that she started.

Lilly Bunch:
Yeah, absolutely, absolutely. And I think the important thing that really happened at Greater Gift as a result of COVID-19 was, we had been up until that point really focused on creating awareness through celebration and by giving the industry an opportunity to participate in our program, which is really simple, right? A sponsor or a CRO does a donation to Greater Gift, we in turn honor their participants in their clinical trial by donating a gift of a vaccine or meal to a child in need. And our basic premise is every good deed deserves another, right? So if Merck, which is one of our great partners, makes a donation to us for all of their participants in their flu vaccine, we then make a donation on their behalf. Those participants get a certificate that say, Thanks from Merck. We really appreciate what you’re doing and we’ve made a donation on your behalf to Gavi, the Vaccine Alliance, to make a donation to a child in need in the Third World. So your impact is actually doubled by Merck’s contribution. So COVID hit and for all of us, not just in the industry, but for all of us, there was a real shift in a lot of things. And the big one for us at Greater Gift was, look, we are a nonprofit organization in the research ecosystem, we are uniquely qualified to make build bridges and build relationship with the kinds of organizations that are working with the underrepresented communities. There is a time for us right now that we must take advantage of, and so we started this diversity work and we went out into the community and we met with free clinics and federally qualified health centers and Boys and Girls Clubs and Salvation Armies and YMCAs, all the nonprofits who were willing and eager to partner with a nonprofit. They’re not so eager to partner with the research industry necessarily, right? There’s lack of trust with healthcare in general and research in particular because of Tuskegee, and that’s the thing, we don’t have to go into, why we know why. But what we recognized at Greater Gift was that there was great power and just validation of those concerns. And going into those communities out of Boys and Girls Club, which serves primarily African American and Latino individuals, and saying, tell us how you feel about research. What are your concerns? What are your fears? What don’t you understand? And for us to be in the position of advocating for the industry as a nonprofit to say, here’s what IRB really means. Normal people outside of those that are probably listening to this podcast don’t know what IRB is. But as my good friend Sergio at Vara said, IRB is why we can be sure that we’re protected. I mean, it’s really the most important piece of the puzzle to regular people in the world, right, who are concerned about Tuskegee happening again. So our role at Greater Gift is to help the community understand what research is, what it is, not, why it’s safe, and most importantly, why without having equitable representation by the Black and Hispanic community, our research is not as good. So when we look at the COVID vaccine and we know that Blacks and Hispanics were three times more likely to have life-threatening and die from COVID than whites were, and then we look at, despite Moderna’s and Pfizer’s and AstraZeneca’s greatest efforts, Blacks and Hispanics were disproportionately not represented in their research. That’s a problem.

Joseph Kim:
Yeah, absolutely. I mean, to elevate your mission from a very simple but altruistic and really great sort of model to this whole notion of diversity in the time of COVID, I think, with stark differences between all these populations in terms of their outcomes, and then tying that back to participation, I think is really compelling, yeah.

Lilly Bunch:
One of the things that I think has been a challenge for us at, during this time that DEI, equity, diversity, equity, inclusion are really at the forefront of a lot of things. It has been at the forefront of the research industry for a long time. But what we would argue at Greater Gift is that we’re doing the same thing over and over and over and not having a better result and not realizing and accepting that at its core, the challenge in the research industry is trust, and you don’t build trust with technology. The research industry loves to have technology platforms to solve problems, but building trust has to take place, I understand it needs to be scalable, but it has to take place on a very personalized relationship basis, and that’s what Greater Gift is all about, building that trust. I just saw and I felt like this was not a coincidence, I saw a post on Facebook this morning that a friend posted that said diversity is being invited to the dance, inclusion is being invited to dance. And that made me angry, and I’ll tell you why, because the last sentence is equity means having been a part of planning the party.

Joseph Kim:
Yes.

Lilly Bunch:
Missed that last part. So Diversity is being invited to the party. Inclusion is being invited to dance. Equity is being a part of planning the party. And that’s what we’ve got to get to in the research industry. We need racially diverse individuals in leadership positions, sponsor companies, in CROs, in sites. Second of all, we need strategies to build trust to include those people in our protocols and how we design our studies and the FDA guidance, which says you must have 33% African Americans because 33% of African Americans get, blah, blah, blah.

Joseph Kim:
Right, right, or more because they’re disproportionately higher, right, like lupus or something.

Lilly Bunch:
That’s exactly right, that’s exactly right. Or, and I want to be clear that Greater Gift is really all about unrepresented community, so it’s not just ethnic minorities, but women are disproportionately suffering from COPD, but yet they are not disproportionately represented in the COPD studies, right? And so there are hosts of examples of we learned recently at SCRS, had a wonderful diversity summit in Austin about six months ago. Lots of folks in the industry were there, it was all industry people. Other than Greater Gift and Black Women in Clinical Research, there were no nonprofits there. So we were all I mean, it’s.

Joseph Kim:
How expensive was it to attend?

Lilly Bunch:
Thank you, right, it was like 1000 bucks and the hotel was 250 bucks a night and blah, blah, blah. I mean, thank God we got a sponsor to send us, and Parexel, who I cannot brag about enough, paid for all of the Black Women in Clinical Research to attend. But we fight this battle all the time with the industry. Look, if you want to really solve this diversity issue, you got to have $100 membership, registration to attend the conference. Otherwise, you’re just talking to more industry people, but if you want to talk about people like Greater Gift, it’s got to be affordable. So anyway, we need to do lots of different levels, not only building trust in the industry, but also making sure that individuals outside of the industry understand that it’s important for their representation in trials.

Joseph Kim:
Yeah.

Lilly Bunch:
Most people who suffer from COPD are not thinking about whether or not people like me were represented in the trials that developed this inhaler that I take. And so the education around healthcare disparities being exacerbated by lack of appropriate representation in clinical research is really the message we’re all about.

Joseph Kim:
Yeah, I mean, so, wow, you just unpacked a lot.

Lilly Bunch:
Sorry, I know, I just.

Joseph Kim:
and, let’s try and tackle a couple of those actual topics. So from the perspective of a pharma company, and this is like 20 years ago, I remember being at Merck in clinical research and having to do a study in HIV that was 100% African Americans because they failed to enroll enough in the regular studies. So in certain, if there was incentive for the pharma companies, in certain cases, the FDA will make you go back and do that anyway, which is more cost and time. So forget about like the obvious good reasons for doing it, but it’s actually going to be more expensive for you. But when, so let’s talk a little bit about the regulations. The FDA does not yet require some, these thresholds, or I don’t want to say quotas, but these specific quotas for specific diseases, is that, would that be an easy fix? And if it is, is that just too far away to even like?

Lilly Bunch:
Lord, I mean, no. So the FDA guidance that just came out, which explicitly stated that disease states, that research for disease step, states should represent the population of the disease state, was pretty radical. I mean maybe radical is not the right word, but I would venture to say that it’s got a lot of sponsors and CROs concerned that the FDA is going to come down and start requiring that if 50% of women are COPD patients, then 50% of women need to be in trials, if, or need to be represented in your trials. If 80% of those with diabetes are in rural communities, then we need to enroll 80% of our participants in diabetic trials need to be rural. I mean, so if you are not white, highly educated, East or West Coast, male, or in an urban center, you are likely not being represented in clinical research. So think about any disease state no matter what it is, white, male, highly educated, San Francisco are probably not the person, you know, not the person with it.

Joseph Kim:
The two keywords was FDA guidance, not, and then should not must.

Lilly Bunch:
Right, so we applaud the FDA for publishing the guidance, and we all know that we should do these things. What I would like us to focus on in the research ecosystem and the industry and what we at Greater Gift are pushing the FDA and the industry to look at is, what are the barriers that make those hard. You can’t just say you should do this or you must do this, but let’s talk to people like the leaders at Greater Gift about what are the barriers. Let me give you a couple of examples. So we recently did some diversity work for a CRO that was interested in enrolling high percentages of minorities, Blacks and Hispanics in a vaccine trial, so that could be healthy, they didn’t have to have any disease state. So I’m just going to pick an example. So Houston was one of the markets. So we go to Houston and where did we go? We went to the neighborhoods where all the Latin Americans lived, right? And we went to the free clinic there and we went to the Latino organizations there that did outreach, and we made our case for how we need to have Latinos involved in clinical research, they bought in, I mean, we spent an entire day with El Jefe, who was the head of this organization, who literally I mean, we walked into a restaurant and it was like Al Capone was, you know, I hate to use a negative, you know, but it was like, everybody was like he was the boss, you know. So we knew that we had hit something, that we were with the right person, and we explained to him how important it was for Latinos to be involved in these studies, he totally bought it. He, we left that meeting and we drove to the site where the trial was being conducted.

Joseph Kim:
How far away was that from his, from?

Lilly Bunch:
45 minutes without traffic in Houston, like, you know what traffic is like in Houston, right? So you get over the first barrier of spending the day with this community and building trust, and then you say, oh, and by the way, you have to go 45 minutes. Okay, so, oh, but we’ve come up with a solution in the research industry, we’ll give you an Uber card. Okay, so if you don’t speak English, you’re new to the community, are you going to get into a car with a stranger who doesn’t speak your language and ride 45 minutes to the trial?

Joseph Kim:
Right, and if you’re.

Lilly Bunch:
I wouldn’t.

Joseph Kim:
If you’re working, I mean.

Lilly Bunch:
And you’re working, right, okay. So that’s the first barrier that we talk about with the sites. And can be a part of the FDA guidance because remember, there are legislative IRB requirements that require, and this is getting a little out of my wheelhouse, so this is where you need to talk to Jennifer Byrne and others in the industry, but they require the principal investigator to be on site while patient visits are taking place. Okay, now, let’s envision a world where that were relaxed, just like a physician doesn’t need to be on-site when they’re supervising a nurse practitioner or a PA, right? They have to be supervised, but they don’t need to be on-site. So let’s envision a world where the FDA or IRB has relaxed that and allowed there to be mobile clinics that went out from the site to the Latino community and enrolled, went to them instead of asking them to come, right? Wow, so what we would say at Greater Gift is the FDA guidance is fabulous, but there are some legislative things that you need to do to decrease some of the barriers. That’s the first barrier, is this focus on principal investigators having to be on-site when things like that happen.

Joseph Kim:
Yeah, and let’s actually talk about that just briefly, because the intent of that isn’t that someone needs to literally be in the same room. It’s okay for them to be down the hall, it’s okay probably, them to be in like an adjacent building if it’s all part of the same campus. So it was never really about location, it was just about oversight, which you can actually do virtually over as long as someone’s available.

Lilly Bunch:
We do it with nurse practitioners and PAs, so I don’t know why we can’t do it, right? So it allows us in research to really embed ourselves in the communities that we’re trying to serve, right? So here’s the second thing. So by definition, by IRB legislative requirement, we don’t talk about the compensation that clinical trial participants receive as compensation, it’s reimbursement for their time, right? Because we don’t want to pay people, it’s the wrong incentive, right? So we don’t call it compensation. We call it reimbursement.

Joseph Kim:
Yes.

Lilly Bunch:
But I have to fill out a W-2, which is for compensation, let me remind you, it’s a federal IRS form for compensation, because the IRS says if you’re paid more than $600 from a particular vendor, then we want to know about it for from a tax standpoint.

Joseph Kim:
Right.

Lilly Bunch:
Again, this is a little out of my wheelhouse, but most clinical trials don’t reimburse you more than $600 unless it’s a really intense maybe, you know, phase one, phase two, or a long, long, long study. So most studies, I was in, am in the COVID, Johnson and Johnson trial. My reimbursement has been, I don’t know, I think, $300 over the last three years.

Joseph Kim:
Yeah, same.

Lilly Bunch:
Yeah, so by definition, by requiring that W-2 right off the bat, you are immediately either physically alienating somebody who doesn’t have a Social Security number or if I’m a member of a recent immigration group that is a little fearful about immigration tracking me, I’m immediately not going to fill out that W-2. So we had 12 Hispanic folks from this community that I just mentioned in Houston desire to sign up for the trial, and they all screen failed because none of them had Social Security numbers.

Joseph Kim:
Right, they didn’t screen fail for clinical reasons.

Lilly Bunch:
Right. So, you know, our experience is that new immigrants are so incredibly grateful to be in this country, they are more willing to participate in these kinds of things than us, you know, entitled white people, right? And so this is a significant barrier that, at first Greater Gift argued that just allow people to opt out of compensation or reimbursement altogether. And I know that’s possible because one of our colleagues says Duke University does that, in the Murdock study, they wanted high percentages of minority participants, and so there was a form they checked out that said, I waive reimbursement, so I know it’s possible. But if we really took a simple step and said, okay, this is reimbursement, not compensation, you don’t need a W-2, that would be the best-case scenario. The second case scenario is, let’s only ask for a W-2 if we are sure that the reimbursement is going to be over $600.

Joseph Kim:
Right, in a calendar year, right?

Lilly Bunch:
In a calendar year, right, so anyway, I think to your point about must versus should, requirement versus nice-to-have, there are some very simple legislative and structural changes that could take place that would have a vastly different impact. The third, for me, is that we have to look at relationship, long-term upstream expensive solutions. It’s not cheap, quick, Facebook ads in Black.

Joseph Kim:
Persona images, yeah.

Lilly Bunch:
Whatever, we have to recognize that, what is the value of having appropriate representation?

Joseph Kim:
Yeah.

Lilly Bunch:
And if it has a high value, then we have to pay for it, right? I mean, I don’t know how else to say that. I mean, that that’s kind of the tricky thing, right? I mean, we want Black and Hispanic individuals to enroll, but we don’t want to do what it costs to pay for it. So if we really are willing to pay what it costs to do that, we would be investing in organizations like Greater Gift, like Acclinate, which is a for-profit, like others that are doing this work upstream, not connected to any trial, right? We’re not an enrollment company, we’re not a recruitment company. We’re trying to make impact in communities that then say, okay, now the population, the fields are ripe and ready for your work. As my friends at Regeneron said, so this is not really just going to help us, this is going to help everybody, right?

Joseph Kim:
Well, half of them will say like, we don’t want it.

Lilly Bunch:
And then they said, that’s what we like about it. It’s all boats rise.

Joseph Kim:
Yeah, you know, well, so let’s talk a little bit about technology, because once the ground is fertile, I think one area technology really does make sense is to allow for that patient choice. And technology is great at being able to triage, where would you like your study? Where would you like your visit this week? Or right from the get-go, because you’ve answered questions in a certain way, all the rest of the trial activities will be done according to a more mobile or virtual model versus you having to come into the site. How valuable is that kind of use of technology to basically customize a patient’s own experience as they want?

Lilly Bunch:
Absolutely, I’m all about it, and they are using a platform for patient engagement that is built on first doing localized work, picking out the two or three cafes in that community, inviting them to an event that provides the community with something that they want, which is why we partner with Feeding America sites, right? People are coming to the Feeding America sites to get food because they’re food insecure. If we can combine with that a brochure that says, oh, and by the way, if you’re diabetic and you don’t have access to care, here, this might be an opportunity for you. So, and then use this technology once those people have signed up to then provide information to them. So absolutely, there is a place for technology in this work. There is no question, but there is no replacement for the one-on-one hands-on relationship building. So as you mentioned in the beginning of this podcast, my background is in fundraising, okay? The fundraising, the classic fundraising model is a concentric circle of direct mail on the outside or technology or Facebook, Instagram, we all know about it, outreach where we say, you know, give 25 bucks here and we, and we build momentum. When we’re talking to Jeff Bezos about a $10 million gift, we’re not doing that with technology. We’re using our concentric circle to move inward to the major gift. So what I would say is that Greater Gift is the major gift strategy, right? We’re looking for the individuals in the community who can lead and be the messenger. Who delivers the message is much more important than even what the message is. So if we get to the church leaders and the Boys and Girls Club leaders and the Salvation Army leaders and the Catholic charity leaders, and we get them to share our message and say this is important, then we use technology after the fact.

Joseph Kim:
Yeah, it’s about sequencing that … order.

Lilly Bunch:
Sequencing. That’s right, we’re building concentric circles. We talk about it in fundraising and sequencing in technology. It’s, there is definitely a place for technology in this work. There’s no question.

Joseph Kim:
You just can’t lead with it and you just can’t bombard people with images and think that’s going to change it.

Lilly Bunch:
There’s a wonderful woman at, who works at Javara with Jennifer Byrne, who’s African-American and grew up in a pretty challenged environment. And she talks about how, you know, she said, a lot of times if Black people see flyers in their neighborhood and they don’t see them in the white neighborhood, that’s not a good thing, right? So if we’re focusing our Facebook ads and our Instagram and all of our push through, in the Black newspaper and it’s not in the Winston-Salem Journal.

Joseph Kim:
Yeah.

Lilly Bunch:
I mean, I get it. I know when I’m being targeted because of the color of my skin, right?

Joseph Kim:
People forget they have access to all media, making very quickly…

Lilly Bunch:
Right, and what she would say is that, you know, it’s like I live in this neighborhood and I work in the white neighborhood and I go to the white neighborhood and I don’t see these advertisements, but I see them when I go home. Hmm, not so good.

Joseph Kim:
Yeah, that’s.

Lilly Bunch:
Unless we make the case like Greater Gift is trying to do, unless we make the case that, no, we only want African Americans and Latinos because we don’t have any of you involved in the study, and we know that the study won’t be good without you.

Joseph Kim:
Yeah, and this medicine is, might, you might take this later, and certainly, you want it to be tested.

Lilly Bunch:
African American boys are three times more likely to die from asthma than white boys, classic health disparity. Now, there are lots of reasons why, but we would argue at Greater Gift that in addition to all the other health disparities, the fact that Black children are not being represented in clinical trial is another reason. Again, as a Black parent who is concerned about health disparity, how can I get you to care about clinical research as one of the ways that represents lack of equity? And if we can show that the reason, part of the reason that Black boys are three times more likely to die from asthma is because they’re not being represented in trials, then Black parents will be more inclined to enroll their kids in trials.

Joseph Kim:
Yeah, for sure. I mean, there’s no evidence to say it’s going to hurt, right? So, I mean, gosh, these two things are.

Lilly Bunch:
And if we can explain the IRB approval process, and my colleague Perla Nunez, who is a team member at Greater Gift and is Hispanic, she immigrated to this country when she was I think seven, has been involved in clinical research her entire career, is really passionate about this issue, and she is, in particular, passionate about making sure that minorities understand what enrollment means, what it doesn’t mean, what are the myths, what are the facts, what are, what’s the reality that you can drop out any time you want. You’re not tied to this study, you have rights and privileges as a participant. And that’s a big piece that we need to make sure people understand that, if you don’t like, if you don’t feel, if you’re not feeling it, drop out. I wanted to talk just for a minute. When we think about tools like Acclinate and we think about technological solutions that companies like Acclinate provide, or companies like CliniSpan, which is a new company that we’ve just started partnering with at Greater Gift. CliniSpan is a company that really does that second step on the patient engagement work, but they recognize that the one-on-one work has to happen first, and so does Acclinate. They both recognize that the role that organizations like Greater Gift plays, where we’re educating and we’re cultivating the fields in advance and getting people to sign up, and then technology will work, I think are really important for us in the industry to understand that it’s not, God, we cannot use a technological solution to a problem that requires building trust because you did not, Joseph Kim and ProofPilot, really trust that Greater Gift was the real deal in doing the work until we had a couple of conversations.

Joseph Kim:
Right, yes, yeah. It’s always a high touch first for the most important things.

Lilly Bunch:
Right.

Joseph Kim:
Yeah, it’s not an Uber you’re calling.

Lilly Bunch:
Yeah, right, exactly. And my other colleague at Greater Gift, Skyler Shore, says all the time, and I love this, I do not understand why I can from my phone, get a car to come pick me up anywhere in the world that I am, and we can’t solve this problem in clinical research.

Joseph Kim:
Yeah, yeah, well, the other challenge I’ve posed to pharma companies is, I can find a hotel room in Bali for two people in about 60 seconds. I challenge you to find me a drug research study for a garden variety type-two diabetic on insulin in this zip code. Let’s go, you know, it’s a contest, and I always win. Like I always win because I can’t do that in under ….

Lilly Bunch:
Yeah! There is no system that exists, and sometimes when I talk to industry leaders, they say, CenterWatch is it, or they say, I mean, I don’t know, I’ve signed up for 20 of them and I keep getting Alzheimer’s studies, and I’m like, you know, I know I’m on the older side, but I am only 54.

Joseph Kim:
Terrible.

Lilly Bunch:
You know that’s, all of these things are what Greater Gift is all about, all of the work upstream that will mean that our partners have an easier time when they’re looking to enroll patients in clinical trials.

Joseph Kim:
I love it, I mean, your mission is truly outsized. I mean, it’s huge now. So final thought, a lot of our audience members are healthcare providers themselves. What would you say to them in terms of like, you know, bust one myth for them around clinical research participation in terms of a diversity lens like, or what’s one thing that they could actually do to encourage that kind of participation?

Lilly Bunch:
I’m glad you asked that question because I have a really simple answer for that. So in our work at Greater Gift, we talk to a lot of minority clinicians who are working at free clinics, Latino clinics, fee-for-service clinics, that are serving massive numbers of underserved and immigrant and black populations, and their number one question to us is, I get it, so how do I find out about a clinical trial? And for those of you who are listening to this podcast, who are in the clinical research industry, no, I would never say, oh, clinicalresearch.gov is a great way to find clinical trials, right? So if you are not a provider that is involved in clinical research or a provider who is doing oncology work, I would say, which is where we think of clinical research, right? I mean, when you get cancer, you think about a clinical trial, but when you get diagnosed with diabetes, you don’t, right? Okay, so for all of those providers who are not in the ecosystem, we have got to develop a simple, clear, and user-friendly way for them to find clinical trials. Likewise, for Lilly Bunch, who has diabetes and I go on there, there are a number of sites that exist that I can sign up and it tells me that it will tell me a clinical trial by me, and none of them work. None of them work even a little bit. So one of the things we have to do in the industry and some people say CenterWatch is it. CenterWatch is not designed to be patient-facing, it’s designed for CROs to match up with sponsors to find trials that they can market. It is not designed as a patient patient-facing, nor is it designed, I don’t think, for a physician-facing. I’m not in that wheelhouse, so I don’t know what that physician-facing piece needs to look like, but I do know that if we had a way for an endocrinologist in Waxahatchee, Texas, to type in clinical trials for diabetes near me, and he could, he or she could find a list of trials, that would move the needle.

Joseph Kim:
Yeah, yeah, and not all those strange phase-one studies and like weird academic, like things for patients that are interventional that can help them immediately.

Lilly Bunch:
We talk about CRAACO in the industry, that is not a term that anyone outside of the industry understands or even knows that term. When we talk about access, what we really need to be talking about in the industry is access for people outside the industry to get into the industry, access for uninsured patients in Newburn, North Carolina, who want to enroll in a diabetes trial or a hypertensive trial, a source for them. That’s what CRAACO is, Clinical Research As A Care Option.

Joseph Kim:
Yeah, I’m so glad you tied that back together because we talked to Jennifer about that, too, and it’s good to have that reinforced amongst two guests for sure.

Lilly Bunch:
Absolutely.

Joseph Kim:
But on that note, Lilly, thank you so much for just really giving us the future and past of clinical research when it comes to diversity and all the challenges. I think some of these things could be quite simple to change and some of them are certainly harder, but it’s got to start somewhere for sure.

Lilly Bunch:
Well, as you can tell, I love this conversation, I love this topic, and just really grateful for the opportunity for Greater Gift to be a part of the solution.

Joseph Kim:
Absolutely, and actually, there’s probably more we should dive into. So we’ll do a diversity part two episode, I think.

Lilly Bunch:
Excellent, excellent.

Joseph Kim:
Yeah, it will be great to have you back.

Lilly Bunch:
Excellent.

Joseph Kim:
Thank you for tuning into Research Confidential. We hope you enjoyed today’s episode. For more information about us, show notes, transcripts, and resources, please visit ProofPilot.com. If you’d like to debunk a clinical research myth, share some war stories, or maybe just show our audience what kind of heroics it takes to pull off gold-standard research, send us your thoughts, episode ideas, and more to help@ProofPilot.com. This show was presented by ProofPilot and is powered by Outcomes Rocket.

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Things You’ll Learn:

  • Building trust requires direct, in-person investment in the community and its leaders, followed by a technology solution to scale, not the other way around.
  • Latinos and African Americans must be better represented in clinical research. For example, African American boys are three times more likely to die from asthma than white boys. African American children not being represented in clinical trials contributes to this disparity.
  • Incongruencies in tax regulations can create barriers for underserved communities. For example, clinical trial participants aren’t allowed to receive “compensation” for their time. Yet participants are often issued tax forms to claim such “compensation” when more than $600 is received from a particular trial
  • The industry should develop a simple, clear, user-friendly way for providers outside the ecosystem to find trials and offer them to potential patients.

Resources:

  • Connect with and follow Lilly Bunch on LinkedIn.
  • Follow Greater Gift on LinkedIn.
  • Explore the Greater Gift Website.
  • For more information about Research Confidential, please visit ProofPilot.com.
  • If you’d like to debunk a clinical research myth, share some more stories, or maybe just show our audience what kind of heroics it takes to pull off gold-standard research, send us your thoughts, episode ideas, and more to Help@ProofPilot.com.
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