Research Confidential_Dezbee McDaniel: Audio automatically transcribed by Sonix

Research Confidential_Dezbee McDaniel: 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:
So I’m really happy to be here today with Dezbee McDaniel. He’s the CEO and co-founder of CliniSpan Health. He’s got a very interesting background. He’s focusing on clinical research right now. Dezbee, welcome to the show.

Dezbee McDaniel:
Glad to be here, Joe, thank you so much for having me. I have heard about Research Confidential before from one of our partners, Seth Rotberg, and he had great things to say, so I’m super psyched to be here. So thank you so much for having me.

Joseph Kim:
Yeah, of course. So let’s start a little bit with your background, because you’re in clinical research now, which is a weird industry for people who don’t know it, but your background is, it’s really interesting. You’re educated in social entrepreneurship and communication, like how did you go from doing that sort of thing and then studying that sort of thing and then landing in clinical research? And, because your whole history is pretty interesting.

Dezbee McDaniel:
So I studied communication studies as a major in college and minored in entrepreneurship. That minor in entrepreneurship was a huge step in the right direction for me as an entrepreneur, because that’s where I decided I wanted to actually be an entrepreneur and lead organizations that change communities, and so in college for me is where the entrepreneurial bug bit me. And with my major, the reason that I chose that major was really because I didn’t know what I wanted to do at the time as a college student, as most college students might not, right? But what I could come to understand was whether I was a doctor, lawyer, entrepreneur, investment banker, consultant, or whatever you might name, having effective communication skills would be really a differentiator. I feel like I made the right decision as I sit here and speak with you today, and that is my highest skill. And then, also I think that is something I use in my work with CliniSpan Health, thinking through how we communicate with patients, how do we communicate with any audience, really, when it comes to a decision-maker at a partnering company, how do we, what’s the process for how we communicate with them? What content do we use, what channels do we use? So thinking through all of communication practices from a scientific standpoint has been very helpful for me as I’m thinking through any and all aspects of my work. So I feel like a lot of people think I’m, because I’m in healthcare, you know, that I’m not using my degree, but it’s just more that I’m using my degree for healthcare communicating, so that’s how I think about it. As far as how I ended up here, so I, as I mentioned, bitten by an entrepreneur bug in college, I ran a lot of business. I had a lot of ideas. There was a donut shop, or Krispy Kreme was on Franklin Street at UNC Chapel Hill, that’s one of the main streets, and they happened to leave. And so there was no provider of donuts in UNC Chapel Hill anymore. And so I think I was a junior in college and I was like, maybe I could provide donuts to college students because now Krispy Kreme is gone and I can fill that hole. So I wrote out the business plan and operational plans, marketing plans, all of these things, and I never actually executed on it. As an entrepreneur, I’ve realized you’ve learned the most in execution, not sitting in a room, strategizing about things that you don’t exactly know are going to happen yet, that you find out what’s going to happen when you execute and take real steps towards it, and so I knew I needed to do that. So I went into a fellowship called Venture for America. So Venture for America, most people might know Teach for America, so it’s similar to the structure of Teach for America, but for startups in … support organizations. So I worked, I moved to the city of Baltimore right after college. That was my first time living away from my family outside of North Carolina, where home is, and so that was just me putting myself in a completely uncomfortable setting, which is, I think, a characteristic of entrepreneurs, that I have seen from entrepreneurs, and so that’s something I’ll always do with myself. So I did that, I worked for the emerging technology centers. They had the first incubator and accelerator programs for startups in Baltimore, and I worked with a voting slip rental technology company, and then I also worked for a company called Tactile Excel and sold in coding boot kits. So I was able to work in marketing, sales, and operations with the Venture for America Fellowship and see how all of these different versions of business added up to a whole system. How these work together, right, worked separately as compartements, but then how does each compartment add up to the whole, and looking at that from a operational standpoint and trying to improve all of that. Being able to learn that with Venture for America is what made me feel, I think, ready to actually start my own business. I had learned, I think, how to strategize and think through business plans. I then had now learned how to execute on the plan, and all of those experiences, I felt ready to start my own business. I started a company called Everywhere Ad. We were attempting to do ride-share advertizing. So advertizing in Ubers and Lyfts, that failed terribly. Word is what I like to say, right? I learned a lot, it was a two-sided marketplace. CliniSpan Health, which I’m going to talk more about, obviously, is a two-sided marketplace, essentially, so there are a lot of principles that I was able to take from Everywhere Ad and bring them into CliniSpan Health, which I think has also accelerated our ability to create impact and make the right decisions with the business. So through all of that, one thing that I learned and saw about myself, and as you saw and mentioned as well, I’m a social innovator in residence at UNC Chapel Hill, it’s to me, it’s for businesses to create real social impact as well. I think all businesses should. I think a business that is simply even focused on financial upside, I think that could be a donation aspect to the business that makes it social. There is no business that cannot have a social aspect. I think I hear entrepreneurs sometimes who say they own a social entrepreneur or that their business is this socially impactful, and I’m just like, it should be. This is our communities, if you are getting, bringing value to a community that then brings you value as far as revenue and other things as well, you should still continue to circulate and share that value with others. I think that’s the premise of social entrepreneurship from my perspective. And so coming from Everywhere Ad and I didn’t necessarily feel like it directly had that social impact, right? It could have, let’s say we did make $1,000,000 in revenue, for example, we could choose to donate some of that to small business owners or invest in small business owners to continue to bring social impact and value, but it wasn’t directly baked into it. And for me, I think that I needed it directly baked into that. At around the same time that I was feeling like I need my next venture to have a social impact, that as we create profit, impact is created as a byproduct. I knew I wanted and needed that. I actually was having an experience with my aunt around the same time where she was talking to me about medicine she was taking. So my aunt happened to have breast cancer and she beat it, thankfully, but she was taking post-chemo medicines where she … side effects, even though doctors assured her that she would not. And so I actually was having a discussion with her about that and ended up thinking through the fact that I bet the reason that happens is because there aren’t enough black women that the drugs are tested on. And so, through the same time that I was learning more about her experience, realizing that it was due to inequities in clinical research, I was actually coming, we were shutting Everywhere Ad down, and I was wanting to go into a new venture that had the social focus. But then I actually met Dr. David Lipschitz, who is our co-founder, and one of our co-founders and chief medical officer, and he had this idea for a diversity in clinical trials platform. All of that is the moment, I think, that culminated to CliniSpan Health being born, from my standpoint. Being able to meet Dr. Lipschitz around the same time that I’m having this experience with my aunt that’s impacted me so much, around the same time, I’m actually shutting down another business and looking for something else with the social impact to sink my teeth into, those three different instances is what I think culminated in me starting with CliniSpan Health and really growing the impact that I now know I can help my aunt have more equitable medicine, and black women in general, and then black people in general, and then all other I think underserved groups, in general, is just I can keep zooming out to the communities that I can directly impact and effect, and the more business that CliniSpan Health does as far as revenue and profit-driving, that means that we are also growing their impact at the exact same time. And so these were the thoughts that I was having and the things I realized that made me really commit my full self to changing clinical research to be more equitable.

Joseph Kim:
Yeah, wow, that is a freaking origin story if I ever heard one. So you went from a donut shop that never got off, that you never even, you were too shy to actually try, through that whole journey. And listen, you’re not an old man like you did a lot in a short period of time, and to have it all converge at the right moment, like the universe works that way sometimes.

Dezbee McDaniel:
Yes, the universe set it up. I don’t know that, from my standpoint, I say that always actually is that I think the universe set up those things, those dominoes to fall all at one time. Yeah, I definitely I say that all the time.

Joseph Kim:
Yeah, you’ve been making a huge dent in the whole problem of diversity and representation in clinical trials, and let’s get, we’ll get into those sort of metrics, definitely, eventually, but I want to help people understand the problem around diversity and proper representation in clinical research. Because you said it real quick, which was like when your mom was taking this drug, your hypothesis was I bet you they didn’t have enough people of color in the trials and you might be right there. So educate the audience and like, why is, what’s the problem here with underrepresented populations in clinical research?

Dezbee McDaniel:
Yes, so the problem, the way I see it, right, the clinical research process is a drawn-out process, right? There are many steps. For the sake of this kind of concept, let’s think of it in two parts, two steps. Step one really is that drug discovery and development process where it’s actually going through the clinical trials. Step two is where it’s now been approved to go to market. The US is made up of 40% people of color, right? The inclusion in part one is only around 2% up to 16%. From my standpoint, those should be very mirroring numbers, that if we have 40% in society, we should be at or near that in clinical trials. Why it’s so important is because while 2% to 16% are involved in part one, 100% of people of color are taking the drugs when they are launched or in the market. So it will make sense from my perspective, if we opted out of part one because we did participate in part two either, but because 100% of us are going to buy those drugs on the market, we very much need to be equitably represented in part one. So that really is the problem that we are working on and that we recognize because again, if 100% of people are going to take it at the point that it’s on the market, then they should feel like they were fairly represented in the part one because they’re going to take improper dosage amounts, it’s the inadvertent side effects because of that lack of equitable representation. And so what it ultimately means, Joe, is that medicines are less efficient and effective for particular, for communities of color and other underserved groups because of that lack of representation in part one that I just discussed. So that’s why it’s really hugely important.

Joseph Kim:
I love how you broke that down. I’ve tried to articulate the problem in other ways, but that was probably the best way I’ve ever heard anyone like describe it. So thank you, I’m going to steal that.

Dezbee McDaniel:
Please, …, share that out, 100%.

Joseph Kim:
All right, so clearly there’s a problem. What’s driving this problem, right? So what is research to the communities of color? What is it to them and why are they not being represented?

Dezbee McDaniel:
Yeah, so there are a few sentiments, right? I think, so there’s a group of people that research is really unknown to them. So we, CliniSpan Health, we do a lot of, … rural cities, right? And I have spoken with two mayors of rural cities, Kinston, North Carolina, and Martinsville, Virginia. Both of these mayors had no idea really what clinical research was and how important it was. So then they also could recognize inequities. I mean, this was the mayor of Martinsville, she’s a woman, a Caucasian woman, and then the mayor of Kist’s a Black male, so both in underserved communities as it relates to clinical research. For me, it was so eye-opening that if the mayors of these towns have no idea what research, clinical research is and why it’s important, how can I expect any citizen of that rural town to know and understand the importance of clinical research?

Joseph Kim:
And why is that? Because there’s a level of trust or that there’s a?

Dezbee McDaniel:
I think that they have not been exposed, it’s access and exposure. So that’s why I was going to say that there’s one group who just have not been able to be, have a platform for clinical research education. They simply have not been in or around clinical research discussions. So that’s the one group that we’re seeing, for other groups, people that do know what clinical research is and why it’s important, there is distrust. Things like the Tuskegee syphilis study in the 1930s where Black men were being told they’re being treated for syphilis, there was no informed consent. The simplest cure was penicillin. It wasn’t introduced to them, and so they were wrongly mistreated. That comes up in conversations so often with people that actually do know about research. So there’s a group of people who don’t know about research at all what’s important, and so they just don’t have the proper access and infrastructure to learn. There’s another group who has access to infrastructure to learn, and they just have some level of distrust just based on past mistreatments. And so that, I would say, is what we’re experiencing right there. We’re able to then, with those two groups, from what CliniSpan Health, our standpoint, what we’re doing, we’re giving a platform to be educated, where you can sign up on our site and we are continuously in our newsletter and other ways, Social Media, educating you on the Tuskegee study and how HIPAA came in the 1990s and then informed consent to protect patients. So we are educating people on things like that in a way that they’re not getting that education already. On the second part for the people who have distrust, two things I would say that we’re doing is introducing our influencer marketing, where we now have people who look like you or walk like you and talk like you actually doing the education, right? So you can get the same message from two different people and the person who is most likely closer to your social location, you’re going to trust their message that much more, even if there’s if it’s the exact same message. And so that’s something that we’re seeing, is that we’re able to build trust simply through who we have as a messenger. And then also because we’re able to tell you about the improvements since then, that it brings back the comfort in being involved. Because again, I think the conversation for us is centered around HIPAA and informed consent, because with the Tuskegee Experiment study, informed consent was a huge thing that came out of that, is you are now able to know what is happening, what’s going into your body, what the experience is like, how many visits, conversation, every aspect of the study, they will tell you before and they have to get you to sign an informed consent document before you participate. So educating people on those steps, and protocols being in place to actually protect the patient. A lot of times we are able to make people feel like, okay, this is a newer way for clinical research to operate where we now feel like those mistrust shouldn’t happen again because of the things that we’re doing to try to alleviate any concern. They’re concerned because these things did happen. And so those are the ways that we feel like we address again from the people who have no knowledge about it and no access, and then people who have knowledge and access but might have some level of distrust.

Joseph Kim:
Yeah, this is a complicated thing you’re doing. So for people who just don’t know, and that’s the best-case scenario, they don’t know. You’re doing a level set, a little bit of education so that they at least have a base foundation. Before you even mention some sort of like enroll in this trial, you’ve got to educate them on a base level of foundation.

Dezbee McDaniel:
And you know what happened with that, actually, Joe? Around probably, let’s say 25 to 30% of the total population knew about clinical research and why it’s important, right? That now it might be more around 45 to 50% of the general population simply because of the COVID vaccine and its development process. So we’ve seen education generally actually skyrocket because of the COVID vaccine and everything that happened with the pandemic. So that’s one market externality that CliniSpan Health always speaks to, that we believe helped us a lot in our work, because people now are understanding what clinical research is as a process and concept. And so that actually ended up being a lot of our conversations as well, because if we talked generally about how drugs are developed, it might not click for some people. But when we start talking about the COVID vaccine specifically, people started clicking and they’re like, Oh, I get it now. That’s what clinical research is in drug development. And so that actually really helped us in our work about being versus hurting a lot of other businesses and industries.

Joseph Kim:
Yeah, and then Group two is actually way more complicated. Group one is hard … group two is, because you can’t make them feel better about the present day without acknowledging the brutal history of the past, and let’s not even call it an experiment like this is a horror story. So I’ll call them the victims of Tuskegee on some level, right? You have to acknowledge that. And I don’t know, and I’m using spin the wrong way, but I think there’s a couple of ways you can spin it, which is, A, this is wrong, and here’s what good came out of it, but not like a higher level, it’s like these black folks were victimized and the world is better off because informed consent comes out of that tragedy. And while there’s a lot of anger you could have, there could also be a lot of pride that those men saved humanity from, like future horrors of experimental medicines.

Dezbee McDaniel:
Yeah, I would agree. I think it’s just structural-wise. I think is that we the healthcare industry handled that incorrectly. I think for the men, to your point, that they could think of it, particularly in a powerful way, but it’s like I would love to feel that same pride from the industry standpoint that we did right by those men and acknowledge them saving society, helping to save society. I think that’s the piece there that I don’t know that it’s spoiling as well for industry. It’s like for the men participating and their families, it’s like they might, could feel some pride about the fact that these men helped save society and change clinical research processes forever. I think that as an industry person and a black man that I wouldn’t have liked to see that the trial operators were treating these men with respect and as if they are medical heroes. I think that’s what I would have wanted to see from it. But yes, 100%, I think it is a big thing that informed consent came out of that and there are always upsides and downsides to everything. And so to that point, I think that is something we try to focus on in that conversation is what are the upsides of that? But it has had, first of all, we acknowledge it, we acknowledge the wrongdoing, that’s always the first part of conversation, is we are like with them, we like, we are with you on that. We think that was, we know that was a huge horror story and mistreatment. We know that creates mistrust and that shows that the healthcare industry at that time was operating in distrustful ways. And then we transition to that downside, we acknowledge we transition to upside. What has come out of that informed consent, protecting the patient, making sure that they know what they’re getting themselves involved in, making sure that we are continuously engaging them in proper, respectful ways throughout the study, and actually treating them as a hero and with gratitude because they don’t have to be in this trial and contributing to society in the ways that they are. And a lot of times I would say there are still people who hold on to their distrust, rightfully so after that, to be honest. I think one conversation sometimes or even a few conversations can trust or rebuild that trust. Your trust is broken a lot faster and it can be built or rebuilt. So that does happen, but I would say there are a fair amount of times where we are able to create comfort, I think, and that I would be honest to say, I think it’s a mix of things. It’s the way that we have the conversation, acknowledging those downsides and then highlighting the upsides. And I truthfully think that the diversity of our team, the way that our team looks, to be honest, I think that’s another thing that makes people feel comfortable. It’s that just to be quite frank, if it’s white men having that same conversation with an African American person or Hispanic person and saying, yes, you all were treated wrongly, and, you know, the Tuskegee study, this is what’s been done since then. It’s again, what I talked about earlier, that same message from a different messenger just does not hit the same. And so I think we have the right messenger who is also sending the right message, and we make people feel a lot more comfortable with that. And so I would say I come away from that conversation always feeling great, because even people who still have that level of discomfort, distrust that they feel more educated, right? And our value is not always just to get someone into a trial, as we talked about, right, we need to invest in the communities. We need to educate them and bring other value that isn’t transactional. And so the fact that we can educate people on HIPAA and informed consent and what’s been different since then, we feel value in that as well, and I think that people appreciate that even if they don’t end up on our platform and in a study, right? They’re more knowledgeable and they can help someone else be more knowledgeable, and the more that knowledge is transferred throughout the community, again, that makes our work a lot easier, I think, to achieve.

Joseph Kim:
Yeah, you said a lot of amazing things in there that I want to unpack a little bit. So one is the idea that someone needs to look like you is, I think, very underestimated in its importance and to make the point very stark, like it would be very awkward for a father to go into a mother’s group and tell them what to do, that just would not play. If it wouldn’t play, they’re not going to play in a lot of other places, so I think the persona is definitely important.

Dezbee McDaniel:
I agree with you there.

Joseph Kim:
The other thing you said, which I want to unpack more deeply is, you mentioned the word Invest, and this is not the first time I’ve heard it. When I interviewed Karen Peterson on a LinkedIn live from Karen’s Club, she said the same thing. And I think the industry has been too focused on activating, so to speak, and not investing, but the difference is between something transactional like activating versus investing, which I think means something more long-term.

Dezbee McDaniel:
Yes, I’m so glad you asked that. So when I think activating, it’s I think campaign. I think there is a timeline. I think there’s a one-month timeline, a two-month, three-month, right? You go into a community for that amount of time and then you leave. They didn’t feel your presence before that campaign? They might, they will not feel your presence after that campaign. That is what I think of as activation, that it has a timetable for when and how we bring value to the community and how we receive value from the community, and then it stops. That’s how I think of activation, because when it’s inactive at that point, again, it’s a stoppage. That is not what I think is the correct way to reach the underserved for clinical research. To your point, the investing aspect I think of as we have a presence in your community before we have campaigns. That we are creating value for your community before we come to you to say, hey, here’s a study that we have, or here’s something I need you to act on for us, that you’re there before they can feel your presence, their value before, that then during a campaign, there may be specific value points that you’re looking for, but then once that’s over, you’re still present in the community and you’re still creating value for them, even if you aren’t necessarily receiving value from them. That’s how you really build the trust, and I think that is what CliniSpan Health is trying to do. When we had these events in rural Martinsville, Virginia, in Kinston, North Carolina, a lot of times we actually are not even promoting, we’re not promoting specific studies at all, we’re actually simply promoting education on clinical research, we’re promoting our platform as a tool for you to learn about clinical research studies that might be available. So when they sign up on our platform, they now are receiving continuous value from us. We have a newsletter that we are putting, we do trivia. So we do trivia on things like when was the Tuskegee syphilis study? 1930s, 1940s, or 50s or 60s as an option, the 1930s being that right answer. So we do trivia like that to educate people where they can feel that continuum is valued, before we ever have a study suggestion that we want to make to them, right? So that’s really what it’s about, is how can you bring value in the realm of clinical research before, during, and after campaigns or transactions that you want to have? Can your brand be ever present in these communities, even when you don’t have studies that the communities can be a part of? I think that’s a huge aspect of how you invest in these communities and that we’ll see an uptick in patient interest, and when we are focusing on activation being so transactional.

Joseph Kim:
Yeah, and so when a pharma company decides to try to increase their diversity, let’s be honest, they’re not investing. Is this because they don’t know how they don’t want to or they’re not the right organization to do it? All the above?

Dezbee McDaniel:
All of the above, all of the above. I think it’s that, I have so many thoughts on that, I’m like, where do I start? I would say that I think some companies are trying. I feel like, I really am like, where do I focus on this? But I think it’s that it’s, I was talking about this last night at our event, and companies that have infrastructure, that looks well to them already can check the box with diversity efforts without real outcomes because it’s beneficial for them in a self-fulfilling prophecy, if that makes sense. So the system as it is beneficial for them, so they don’t necessarily want to see it be different, I guess is what I’m saying. Something is I think that when with the system set up the way it is and they don’t want to see it differently because they might not win as much or the same, so that.

Joseph Kim:
Or it’s going to cost them more.

Dezbee McDaniel:
Exactly, cost, exactly, exactly, it’s a bit more risky for them. And then I think there are companies who really want to do it and don’t have the right processes or team. One thing I see with large pharma companies is just bureaucracy. I think there’s a lot of bureaucracy that goes on, that, there are people here who are strategizing about protocols, developing protocols, they have no idea what this target patient they are trying to get involved in this study feels about that protocol. They don’t then think about actually going to get their feedback before developing the protocol because of these, whatever corporate processes that are in place. That’s something I’ve seen as well, is that companies might want to have more diversity in trials, but they’re doing things the way they’ve typically done them. And if the things you’ve typically done have not led to diversity in trials, you might want to do something atypical. And it’s not so easy to get these large companies to identify and realize that doing something atypical might actually be effective for them. And so those are really, even I think, some that stand out is just, I think, bureaucracy and wanting to do things the same way because you, it’s worked in certain ways and you just want to keep doing that self-fulfilling prophecy as some companies have their infrastructure the way it is and field studies the way they already do, and they just want to keep doing that. They don’t actually want to really create more diverse outcomes and they might then try to check a box based on some FDA guidance or some threshold or target that they have to. I think there’s a myriad of other things, but those are two big ones that I’ve really seen and actually experienced. I think in trying to get initiatives going with some companies and doing work with them, it’s just that they make it so hard to actually get real feedback and actually do something in an efficient manner that doesn’t take too long or feel like a swindle. So I would say those are the two of the main ones that I might, would harp on to be honest, and want to see companies do differently around those. Be open to doing atypical things. For example, our influencer Marketing Considered is considered atypical right now, and there have been companies that have taken chances on that and I think found that has worked well for them. And we talked to companies who this is too new for them and they don’t digest this as well and they don’t want to take a chance on this because it’s too new for them or want to suggest to companies to be open to atypical. There are so many dollars thrown at things that don’t work. Throw some dollars at things that are new that might work. I think there’s more potential in new things that might work versus doing something that you always do that has never really gotten you a return, or reached one underserved patient.

Joseph Kim:
Sure, and let’s talk about influencer marketing, because you mentioned it a couple of times. We’ve talked a little bit about it, like it’s one level of influencer marketing is make sure the person is, looks like you and behaviorally is… Is influencer marketing really that new for some folks or are they not just connecting the dots?

Dezbee McDaniel:
So I think it’s new for the industry. I don’t think it’s new for the general population to know and understand what influencer marketing is. I think it’s new to pair influencer marketing with clinical research, clinical trial recruitment specifically. I think the merging of those concepts is what’s very new. And I always tried to, I think, connect the dots for people, right, is that we’ve seen influencer marketing grow the resale industry for sneakers. We’ve seen, we have influencer marketing with college athletes now helping promote local businesses and brands. You have some, influencer marketing is popping up across everything. And I was sitting back one day and just thinking about that exactly, I was like, I see influencer marketing everywhere. Why, or has it been introduced to clinical research? And I had not found a platform that had done that. And then on Instagram, actually myself, I follow a woman who is an eczema influencer that she actually promotes how to heal eczema in natural ways, or natural medicines. So I actually followed her and that was another thing that made me say, huh, she doesn’t promote studies or clinical research directly, but she is promoting health equity as an individual influencer. I was like, can that be a …? And so that’s what I feel like we are now developing, right, is that we have a team of influencers who care about health equity, who are of different backgrounds, who have social media communities, that they are …, right, and they look like they walk like and talk like them. And so that really has been, I think, like I said, instrumental impact … I think that we’ve been able to create. Just again, because the messenger is able to be trusted by the person that is receiving that message because they are of the same communities.

Joseph Kim:
Let’s talk about how you actually create, how you find the influence. Like influencers don’t just fall out of trees, right? They’re influencers because they’ve been doing something for a while and they have a little expertise and trust. How do you cultivate your influencers and get their heads wrapped around research? And then more than that, talk about specific trials that might be of interest to their community.

Dezbee McDaniel:
Yes, so we actually are able to convert users on our platform into influencers. So as you can imagine with being that the influencer is of the same target as a user, ends up overlapping quite a bit. And so we are able to do callouts for influencers to our current user base where they’re able to say, introduce us to their network of influencers that they already know and follow actually. And so that I think is how we have done it and kept the quality high because it’s been very much a networking community thing, that we sourced our first influencers from our own personal networks, but since then it’s continued to grow in a network type of way. That influencer has helped us get users, we then make a call out to those users about influencers they know, we have another list of influencers, we work with them, we get users on the platform and the cycle continues. And so that’s really been the way that we’ve done that, and it’s because people of these communities actually do care and they want to share it and they want more people involved because that actually helps their community. But then personally, the more people involved on our platform, the more equity in trials, the more medicines are equitable for your community, the more they’re equitable for mom and dad, the more they equitable for you. So it’s just a chain of people of the same community actually caring about everyone of the community all the way down to themselves as an individual of that community. And so that’s really, I think how we’re seeing that network effect really work for us, on the influencer outreach.

Joseph Kim:
Yeah, so this is, this goes back to your initial goal of creating a business that not just has profit, but by definition of profit, you’re building social value within that company and the customers and the partners they serve. I love the idea that you’re using knowledge as your currency to build trust, and then the payoff for everyone is opportunity for an influencer, for creating health, participating in research. It’s a really elegant system.

Dezbee McDaniel:
I appreciate that, I appreciate that very much. It’s been a lot to get to this point, a lot of learning, a lot of what I want to emphasize, a lot of listening to patients in these communities. That is what got us here, that we have spoken with those people on the phone. We have done Zoom interviews of people where we are simply just listening to their perspectives. We’re listening to every aspect of how they experience, not the trial itself at a site, but even, how do you experience the outreach when we know that someone might have seen their first clinical research content on Facebook or Instagram, we then are able to say, hey, this is where this group of people are wanting to learn about clinical research. I think, again, another thing that I talked about with the pharma companies is, are you taking the time to learn and understand them and where they are, and are you meeting them there? So I feel like that’s what CliniSpan Health is doing, is we’re taking the time, investing that time to learn to understand them and then actually meet them where they are. And then when we do that, we’re communicating things in a way that they can understand. … is not in a way that most people can understand.

Joseph Kim:
I can’t understand it.

Dezbee McDaniel:
They hardly either. … no clinical research, right? So how do we expect someone that’s just learning about it to know how to navigate clinicaltrials.gov? So yeah, that’s what we’re doing. Even, again, simply our website as a platform to start a study. It’s much more seamless than clinicaltrials.gov. And so those are the things that we feel like we’re really doing to actually make a difference for these patients in these communities.

Joseph Kim:
Dezbee, I knew we would be talking so much. We’re going to have to do a part two, definitely, because we’re not even done the first question.

Dezbee McDaniel:
Let’s do it.

Joseph Kim:
So I’m still finishing the first question. So the other part is, tell us more about the reasons why it’s hard for the underserved population, people of color, to access research. How important is location? Clearly, you say if the person doesn’t look like you, that can be a barrier. But what about location? How important is that?

Dezbee McDaniel:
Yeah, so location is of some importance. It comes down to things like transportation issues.

Joseph Kim:
Because the clinic is far away.

Dezbee McDaniel:
Yes, exactly. That’s a huge one. Even child care services, I think a lot of people in the community we’re trying to reach maybe do, maybe blue-collar work or work at a different level in the company where they don’t have as much autonomy to change their schedules, so it’s a lot of things like that. Now, that is very true. What I want to maybe mention that I think is more of the issue is that on two sides, access is not easy to know. That self-fulfilling prophecy we were talking about is companies don’t think that these people want to be involved, so they don’t work as hard to create access for it. So don’t presume that people in these communities don’t want to be involved because then your actions and plans and your infrastructure follow suit. So that’s one side, that’s from the industry side. On the patient side, then, how that translates to them is the access isn’t easy. It’s actually made a difficult process to get into a trial. The more friction on any user experience, the more likely they are to not want what you have, right? I think that friction now is then created by industry for people in these underserved markets to access trials that is made so difficult that even if they did have an interest and did try, they might not get in anyway. So that then creates a two-pronged problem, create an interest, and then once you got interest, it might go away because they find how hard it is to access. So you have to keep the interest up and make easy access. So I think those are really more around the reasons actually why people are not involved more. What we’re finding and what we want to debunk as a myth is that black people and Hispanic people or other groups of underserved communities don’t want to be involved. CliniSpan Health is finding that to be not true. These communities do want to be involved. They want to be involved with a trusted partner, and they want the access to be as easy as it is, for example, to order a pizza to their home. And so that, I think is how we think about it, is that we want to have that, be that trusted partner, and then we also want to make access as simple as ordering delivery pizza to your home. So I think on the industry side and patient side, that’s how we see the lack of diversity in trials and why that might be happening.

Joseph Kim:
Yeah, and you bring up a really good point, harkening back to informed consent and making sure we’re not harming people, if somebody has to take two buses and their visit door to door is 4 hours instead of an hour and a half, because of that, the cash outlay for that, the time they spend, is more than the person who lives close by or can drive there.

Dezbee McDaniel:
Exactly, exactly.

Joseph Kim:
Literally, costs them more.

Dezbee McDaniel:
Yeah, exactly, exactly. That’s exactly it, Joe. That’s exactly it. It is costing the patient more. And even from an ethos standpoint for CliniSpan Health, we will not push patients into a study that will cost them. I think that’s something that’s huge for us. I don’t think that our patient community will have a high interest in that in the first place, but just from an ethos and trusted partner standpoint, that is something that we will not take trials that we believe would be of a financial burden or cost to our patient community.

Joseph Kim:
Yeah, and here’s where maybe sponsor companies and IRBs confuse equality and equitability right? Equality might be everyone gets $50, equitable means you get what you need and it might be $75 and you only need $1. Yeah, so we need to be.

Dezbee McDaniel:
We take it. Yeah, we take it to a context of life and they’re compensated or receive value based on their specific context of life. That’s 100% the way it should be, and, where I think there’s a lot more equality going on than equity in the industry at the moment.

Joseph Kim:
Listen, we definitely have that part two. So part two, we want to talk about the dovetailing between clinical research and healthcare and like how those things reinforce or conflict with each other. We also want to talk about technology in this community because I think there’s a lot of myths we need to debunk there. But before we wrap up, tell us a little bit about the, give us some metrics, like how much of a difference is CliniSpan doing in terms of enrollment of Black and Brown population?

Dezbee McDaniel:
Yeah, always proud to share this, Joe, that we worked with the Novavax COVID vaccine study and we focus on African-Americans for that study. Novavax put their data out publicly to show that they had a 12% inclusion rate for African Americans when the average is at or near 3%. And so our model helped create a four times more diverse COVID vaccine trial and ultimately a Novavax COVID vaccine was FDA approved. So we helped the approved COVID vaccine actually be more equitable for African Americans specifically. And we’re also seeing 3 to 8 times improvement of diversity and inclusion in pipelines across asthma, CLV, eczema, psoriasis, so there are a lot of other areas that we are creating huge improvement as it relates to diversity and inclusion for patients in clinical trials. And so we’re really excited to see how that impact keeps growing and how much more we really can move the needle, right? We feel like we’re moving the needle a lot, but we focus on continuous improvement, so we want to move the needle, until that 40% people of color in the US is more closely related to the procedures of people actually, people of color actually represented in clinical trials as well.

Joseph Kim:
Those figures are the first that I’ve seen any organization actually have real impact that you can measure, so congratulations to you. I think what you’re doing is amazing. I love the way you’re doing it. I love what you’re doing. We definitely have to have a part two here, but it was amazing to sit down with you and amplify your voice and hear more about what you’re doing and why you’re doing it. Dezbee, thank you, thank you so much for coming on the show.

Dezbee McDaniel:
Thank you so much, Joe, to you and ProofPilot. This was amazing, and I will 100% be back for part two and as many parts as you might like.

Joseph Kim:
Sounds good, talk to you soon.

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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