January 13, 2022
Speaking the Same Language. Dispelling Myths in Minority Communities About Clinical Trials - Van Johnson
VP of Business Development at Benchmark ResearchGuest
With ethnic minorities representing as little as 2% of all clinical trial participants in the US, Van Johnson, VP of business development at Benchmark Research, talks about the pressing issues surrounding underserved communities. He advises on how to increase engagement by addressing fears and speaking the "right language" and shares his optimism for the future in closing the clinical trial gap.
“The key to building trust is for the pharmaceutical companies, the CROs, and clinical research sites to understand and acknowledge inequities.”
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This week, Van Johnson joins the podcast to talk about his work as vice president of business development at global clinical research firm, Benchmark Research. Now part of Van's role is to engage with diverse communities and work to dispel myths about clinical trials and vaccines to protect the Black community. During the podcast, Van talks about the launch of the Minorities Advancing Clinical Research Operation or MACRO program, explains why speaking the right language is so important, and much more. Welcome, Van. Could you start by explaining more about how you got started in your career and what Benchmark Research does?
VAN JOHNSON: Thank you, Hannah. Benchmark is one of the leading vaccine clinical research networks in the US. And although we have a stellar reputation for successfully conducting vaccine clinical research trials, we excel in other therapeutic areas as well, such as smoking cessation and other tobacco-related trials, pediatric trials, device and diagnostic, and many other areas we conduct clinical trials. And I got my start in clinical research just over six years ago when a friend took on an HR role at a different clinical research firm and suggested me as their business development person.
And as they say, the rest is history.
HANNAH: It's coming
up to the one-year anniversary of the Minorities Advancing Clinical Research Operation or MACRO program, launched by Benchmark Research in 2021. Now the goal is to advance the cause of diverse representation of participants in trials. Could you explain more about this?
VAN JOHNSON: The goal of MACRO is twofold. First, we want to do our part to educate the masses on clinical research and its benefits to all humankind in an effort to bring more minorities into clinical research.
There is so many misconceptions and misinformation--
in so many cases, no information at all surrounding clinical research.
Through our site's individual outreach efforts, through various conferences, we're part of the National Diversity Council.
We do quite a bit through social media and just media as a whole. And other avenues such as this podcast, which I thank you for allowing me to be a part of. We want to do our best to get the facts out.
Now secondly, as part of MACRO, we are working with higher academia and other organizations to get more individuals from the underserved community involved in clinical research from a career perspective as well. Yes, we want to get them through the door to be participants in clinical research, but we also would like to get more minorities involved in the career of clinical research.
For example, we're reaching out to HBCUs that offer live science programs and talking to them about careers and the clinical research field and possibly even internships. And we feel that getting more minorities involved in clinical research as a career can get more minorities involved in clinical research as a volunteer.
The rationale behind this is that people are more comfortable with people that they can relate to and connect to, especially if that connection is cultural. And I'm a bit more comfortable if I walk into a doctor's office and he or she looks like me or even if that coordinator looks a little bit like me. And there's an immediate initial unspoken connection in situations like that.
That makes sense. I read an interesting study recently that talked about how worldwide is the mix of site staff in terms of diversity increased, the diversity of patients enrolled also increased. So much of this is about trust. How do you go about building confidence?
VAN JOHNSON: Well, without getting to political, politics was a part of the problem, and that's pretty much all I'm going to say about that. Of course, history does not help the situation. And the underserved community, the sin of the government in relation to the Tuskegee Experiment, in relation to Henrietta Lacks, and other instances that are highly documented cases. These are continual instances over the years and even yet still going on today, where the underserved community is still being underserved.
With many, it has understandably caused this level of distrust so that when something comes along that we should be a part of and can benefit from, there's still that skepticism, and that skepticism extends far beyond just clinical research and medicine. The underserved community has been underserved by the medical community, by the political community, by the financial community, and I must mention the legal community.
For us in clinical research, the key to building trust is for the pharmaceutical companies, the CROs, and clinical research sites to understand and acknowledge these inequities. Another thing that we can do is to have our sites to represent our communities, those communities that we're trying to reach out to. We should be able to represent those communities.
Now part of the problem is that this is something that should have been happening long ago. Many in the minority community look at this push that's going on now to be included as very suspicious. Some interpret the urgency for minorities to get involved as another way of using and profiting off of minorities, and we must be able to show that this is not the case.
We have to get to these communities with the knowledge that's needed. We have to get out in these communities and do what's necessary to attract them. And to me, that's going to be education.
Now I've said for some time now that recruiters might be in touch, but they're not always in tune.
One of the best ways of doing this is by having someone from their community or someone who has knowledge of the culture of that community involved in the recruiting, involved in the outreach. There are instances where recruiters may have reached out and inadvertently offended the potential participant from lack of knowledge of culture. This was not their intent, but because they didn't have the knowledge of that culture, something that they said could have easily offended someone without that even being the intent.
HANNAH: It's true that in so many other areas, we're encouraged to understand the culture so we can adapt. For example, when it comes to work. So why not with recruitment for trials?
VAN JOHNSON: Before I reached out to a person at a company that I'm trying to do business with, I look up that company, and I try to get as much information about that company and that company's culture from their website, from web articles, from any source that I can get it to learn more about that company and that company's culture. Then I take it a step further and I do the same for the person that I'm attempting to meet with.
I scour their LinkedIn page, other avenues to learn as much about that person. And when I contact them, I have some form of connection already by being the armed with some knowledge about that person. Well, we need to do the very same thing when we reach out to these communities to recruit them to be a part of clinical trials.
HANNAH: Can you give me
some examples of the kind of mistakes people can make when it comes to engaging with minority communities?
VAN JOHNSON: I did a webinar not long ago, and one of the examples I gave about speaking the proper language, in the beginning of my presentation, and it was in the height of COVID, so everything at that time was very virtual.
And the first thing I put up on the screen was simply a bowl of rice with chopsticks sticking down in the center of the bowl of rice. And I simply asked the question, what do you see? And I had various answers from, hey, a bowl of rice or someone even mentioned I see what I'm having for lunch this afternoon.
But what I was trying to show them is that in certain cultures, a bowl of rice with chopsticks sticking down in it can be considered either an insult or a curse, depending upon what culture you're dealing with. And if you don't know that, you can simply do it, not meaning to offend anyone, and you can offend them. And there are certain things that can be done in different cultures, whether it be the Black community, whether it be a Hispanic community, whether it be the Asian-American community. Simple things that can be said where you mean no harm, but it can be considered offensive.
In the Asian community, oftentimes people may be called one nationality or one race or whatever you want to call it, and it's something totally different. Where some, it may not bother them at all, but others are offended by it. I've seen the same in the Hispanic community.
In the Black community, there are certain things that can be said by one group of people and it's not a problem, and that very same thing can be said by another group that's not maybe part of that culture, part of that race, what have you, and it can be a problem. So it's just a matter of getting to know--
we can't know everything because some things may offend one person and it may not bother the next person at all. But at least if we're armed with some sort of information going in, we're better prepared to walk the line, walk the middle of the road if that makes sense.
HANNAH: We hear
a lot of industry talk about diversity and accessibility. The thing is, the numbers still aren't there. Why do you think it's been so difficult to make progress in this area?
VAN JOHNSON: In my opinion, it all falls back to trust and knowledge. If we provide good information, it can really help build trust. Now, there are some individuals who regardless of the information given, regardless of the number of minorities you have at your site that represents them, regardless of the benefits you can tout about being a part of clinical research, there are some individuals who will never ever consider being part of what they look at as big bad pharmaceutical machine. Until they can have an epiphany, I really don't spend a lot of time, effort, and energy on those individuals.
In June of 2021, Harvard Business Review published an article that stated that while people of color make up about 39% of the US population, these groups represent 2% to 16% of all participants in trials, and that's contingent upon, I guess, the therapeutic area, the range of 2 to 16. Politics, social media, history, and other factors all play a part in these disappointing numbers.
Now it's important that we continue to fight to combat these disparities because our health, and in some cases our very lives, depend on it. So we want to do everything we can to really try to get these numbers up. And yes, you're right, numbers still aren't good, but I am just believing that that will change.
HANNAH: I think
optimism can be incredibly powerful, especially combined with action, like the work you're doing at Benchmark.
VAN JOHNSON: I like to peg myself as the eternal optimist. I want to believe that we'll make a serious impact to alter these numbers. However, I feel that it won't happen as expeditiously as we like. We at Benchmark will continue to push for diversity, equity, and inclusion in clinical trials.
And I currently work with a number of other organizations outside of Benchmark or that's connected to Benchmark in some way to try our best to achieve this goal.
HANNAH: I know that you've been working with some incredible organizations to advance the topic of diversity in clinical trials. Could you explain to our listeners more about these?
VAN JOHNSON: We're currently, several members of Benchmark Research are part of the National Diversity Council.
Benchmark is part of HyperCORE International, and I serve with the Diversity Committee there with HyperCORE International. I currently serve with the STARR Coalition on one of their diversity work groups, and I am getting ready to work with SCRS in their diversity work group as well. And then, of course, working with MACRO and also part of two other organizations.
I know it doesn't sound like I should be a part of this organization but I'm part of Black Women in Clinical Research, and I'm also part of another organization called Black Men in Clinical Research, as well as--
and I'm not Latino--
but Latinos in Clinical Research. And it's a great group online that allows individuals to share information, support one another, things of that nature. So if we continue to do things like this, I'm hoping and praying that the outlook for building diversity, equity, and inclusion in clinical research would be better.
so much, Van. For all listeners interested in learning about the MACRO program, visit www.benchmarkres earch.net/diversity. And Van, you'll have to come back on the podcast later in the year and tell us how things are going.
VAN JOHNSON: Happily.
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