Advancing Healthcare Equity: Diversity in Clinical Trials with Dr. Adrelia Allen

Intro - 00:00:10:

You're listening to the Diversity: Beyond the Checkbox brought to you by the Diversity Movement. I'm your host, Jackie Ferguson, author, speaker, and human rights advocate. On this show, I'm talking to trailblazers, game changers, and glass ceiling breakers who share their inspiring stories and insights on business, inclusion, and personal development. Thank you for downloading this episode. I am truly grateful for you. Enjoy the show.

Jackie - 00:00:44:

You're listening to Diversity: Beyond the Checkbox , my guest today is Dr. Adrelia Allen, Executive Director of Clinical Trial Patient Diversity at the pharmaceutical company Merck. Adrelia, thank you so much for being here.

Adrelia - 00:00:58:

Yes, and Jackie, thank you for having me and engaging in this conversation today.

Jackie - 00:01:05:

Absolutely. Adrelia, tell us a little more about your role at Merck. How did your career evolve to this point?

Adrelia - 00:01:13:

Yes. So as Executive Director of Clinical Trial Patient Diversity at Merck, I'm responsible for driving change in the clinical trial recruitment process to make clinical research reflective of the patients intended to take the medications that we're bringing to the market. And as part of my role in managing clinical trial diversity, I work with several teams where we're devising strategies that would be applicable to families like mine and yours to ensure that they have a seat at the table and working to be a changemaker within my organization to help improve the experiences of underserved communities. Although I've been in the healthcare industry for more than 20 years, I began my career as a pharmacist because I was sparked by the process of how we bring new medications to patients. Along the way, I've had several roles in clinical trials, like management, clinical trial operations and even pharmaceutical sales. But my current role is something that I actually helped to design. And to be able to meet a need as a clinical research manager in charge of clinical trials across the US, it became very evident to me that trials that I was overseeing did not enroll patients that looked like me. I presented a case about why diversity in clinical trials is important and why we had to really ensure that it was at the forefront of clinical research moving forward. And additionally, coming out of the pandemic, we've all seen the health and social inequities that have been spotlighted. And so from a lot of this, I just really kind of vowed to move without fear and to do everything that I could to make clinical trials available to all patients, races, ethnicities, and even gender, sex and for even patients of disability capabilities because we need all patients and clinical research to ensure that we're bringing the best of medicine to all patients.

Jackie - 00:03:43:

Absolutely. Adrelia, from your perspective, why are there so many trust issues with health care and specifically clinical trials for culturally diverse people?

Adrelia - 00:03:56:

Yeah, so that's a really loaded question, I'll say, and thinking through my family's medical history and knowing that we really have, it's a plague of different types of cancers and other comorbidities. And also knowing that, right now, we're having new scientific inventions that are be envelopable for patients and really changing the trajectory of these patients' lives. And so I worry that because of the medical mistrust. Those patients, our patients, my family would be left out of being able to take or partake of these new scientific novel medications. And so for generations, medical mistrust has plagued our healthcare and clinical trial system from, and I'll say beyond Tuskegee, the Syphilis Study to striking disparities in even currently with pain treatment for patients today. So this disparity in due to, I was like, cultural unconscious, unbiased and all these external barriers that have really plagued and really had a place with making some patients mistrustful of the healthcare system. I actually had the opportunity of dealing with this firsthand with my father when he was diagnosed with prostate cancer. He was really concerned that his medical team would not treat him with the respect that he deserved. And due to his negative experiences of growing up in the midst of some of these medical negative experiences, it was really hard to kind of change his mind and explain to him the rules that were in place so that he wouldn't be fearful and really being fearful of how he would be treated primarily because of the color of his skin. And so instead of brushing off of the concerns, we really do have to address and educate and have conversations and listen to patients as they're talking about why they feel the way that they feel about mistrust. And knowing that trust is at the root of someone's decision to participate or not in a clinical trial, action needs to be taken to build relationships within communities and working with trusted voices to ensure that patients have the right information to make the right decisions for their medical journey, especially in communities where clinical trial participation is low. Research has shown that having a research or even a medical team that resembles, reflects the patients. Those patients have a better experience and even from a trust standpoint are  feel more trustworthy of their team to make the right decisions for them. So we do have to do a better job with diversifying the clinical trial workforce and with the hopes of helping to address some of those issues with trust.

Jackie - 00:07:43:

Absolutely. What I would say is whether it's personal experiences for underrepresented folks or the conversations that underrepresented people are having about their other experiences, there is a real mistrust with the healthcare community. I totally agree that if we had more doctors and healthcare professionals, and clinical trial leaders, right, that are looking like the underrepresented people that they're trying to serve. There would be a little bit more trust because there's you can identify with that person. I totally get that. How can we open more doors for underrepresented students to pursue clinical research and medicine as a career?

Adrelia - 00:08:37:

Yes. So that is a very key component. We know within the industry, even just for Black physicians, Hispanic physicians, the numbers are low. So we do have to do a better job with even addressing the lack of a diverse physicians in our country. And it's important that we create programs that facilitate mentoring. For young people of color and starting as early as elementary school to really promote careers in STEM and continuing to develop that eagerness and the learning about science at an early age. And within our residents making sure that they are aware of what is required to become a principal investigator to conduct clinical research. So I think we have to do a better job with those STEM programs and promoting the, and increasing just the exposure for young people about what's available in research. From my personal experience, I knew I could become a pharmacist because I had a mentor that looked like me and who came from a similar background and was successful in her pharmacy career and gave me hope and motivation that I could also do it. So we need a similar process where young students, Black students, Hispanic students, can see someone that looks like them, that's a medical student, that's a resident, that's a fellow, and that's a principal investigator so that they can see that they can do it too. The healthcare is big and there are lots of different roles, and it's important that we encourage children to learn about these different roles in the medical field and what it looks like. And speaking from my role at Merck and knowing how much we value a diverse workplace and what that can bring to the company is of just having diverse thought and bringing more innovation and how we attract new talent. This current generation is very social media savvy and focused and we need to be able to meet them where they are. So placing these careers in front of them is going to be, you know, what is required so that they too can see themselves in these roles.

Jackie - 00:11:32:

Got it. And then Adrelia, tell me, what is Merck doing to increase access and inclusion in clinical trials?

Adrelia - 00:11:41:

Yes, so at Merck we are committed to helping people from all backgrounds address their health needs and ensuring that our research reflects the people we serve. We've taken several concrete steps to help historically underrepresented communities to access our clinical trials and working with different vendors and really trying to be creative in how do we, engage in communities. So we are focusing on enhancing diversity in clinical trials by engaging in multicultural communities. We are partnering with have several different partnerships where we're trying to achieve this. We are partnering with the Novartis Foundation to engage with the four historically Black medical schools to build infrastructure at these institutions where clinical trials can be brought to the patients that are being served by these communities. And so we are referring to Howard University Medical College, Meharry Medical School, Morehouse School of Medicine and Charles Drew Medical School to really do what we can to make clinical trial participation an option for the patients in those communities. We're also partnering with organizations focused on increasing participation of underrepresented communities in clinical trials and partnering with different vendor partners such as blackhealth.org to engage the Black community in providing information about clinical trials on their website and also providing access to where their constituents can access our clinical trials binder to identify any clinical research opportunities that are available in their communities and also to just see what is available. We are also working to provide trusted voices, research navigators to really help be a liaison between the community and the research site and with someone that looks like the community to be able to have those discussions about the lack of trust, what are the questions that patients may have about participating in a clinical trial and helping them to overcome that. As they journey to consider participating in a clinical trial. And we're looking for these research navigators to also help navigate new patients in clinical research. It's a different landscape and the different documents that are available, the procedures. So it really brings along a someone that will support those patients to get through the clinical trial. And so as we continue to work and addressing the lack of diversity in our clinical trials, we're using different methods to technology to identify and learn based on the epidemiology. Where the patients are with the disease, where those communities are, and ensuring that we can place a clinical trial, site in those communities where they would have access. And so there's a lot of activities that we're putting into play. And I must say, even though a large focus is how can we bring clinical trials closer to where patients are? And that's why a lot is focused on community engagement. But even though we may be in the right community and the clinical trial is there for patients, there are still barriers to participation such as transportation, the social determinants of health. So we are providing ride share assistance to help patients be transported to the clinical trial site and looking at the stipend reimbursement of their time and how we can support because we know it is a sacrifice for patients to participate and especially in underrepresented communities we want to be able to remove as many of these barriers that would prevent them from participating to create a path for them to consider participating in a clinical trial.

Jackie - 00:16:40:

That's really great. Adrelia, as we think about, you know, we talked about the mistrust, but as we think about some of the inequities that exist in healthcare from a treatment standpoint, from a pain management standpoint. What are ways that the medical community is or should be? Working to right those issues.

Adrelia - 00:17:05:

Yes, and I think we touched on this, when we talk about how do we open the doors for more underrepresented students to pursue. I think in order to ensure that medical research is inclusive, the health community. Must continue to invest in new ways to educate for new practitioners and even for the patients to recruit and engage clinical trial participants who are demographically diverse. Overall, the healthcare community has an opportunity and responsibility to increase awareness about clinical trials. Many people do not enroll in clinical trials simply because they don't have enough information about them or how to participate. And even some, it's simply just because they were never asked. And so we do have to put into place measurements where it is a... And automatic that every patient would be asked to participate regardless of what the healthcare practitioner feels whether or not someone will, but to ask the question. And then we have to also build relationships within communities before there is a need of even considering to participate in a clinical trial. Before there is an ask, we need to show that we are being trustworthy and we are concerned about the communities and how can we support that community, without even needing them to ask. And so one step toward accomplishing this is increasing the diversity of research coordinators and investigators. We've seen where patients have indicated that they would like to hear about clinical trial information from someone that looks like them. And it may not be a diverse principal investigator, but has that research site been mindful enough to ensure that the research staff reflects the community that they're serving. And patients have indicated that just having that similarity and understanding a person's culture and their experiences, that is a key to building trust. So we do have to do a better job with diversifying the clinical research community and also pharma companies may also be able to help with financial, and we talked about the travel barriers to assist patients. And some people are concerned with about the time commitment, about the indirect and the direct costs associated with participating in a clinical trial like child care. And so we're continuing to partner with other organizations to help with these types of challenges and barriers that are preventing diverse patients from participating, similar with the Lazarex Cancer Foundation that's focused on, they have an IMPACT Program which aims to reimburse out-of-pocket travel costs for oncology trial participants. And so we're also, as I shared, working with GreenFire, for all of our trials to be able to provide the, you know, remove the barrier for transportation. There's a solution that we've set aside to help patients so that travel does not become a hindrance for patients for participating in our clinical trials. So summing up all of this, we do have to do a better job of finding solutions to remove the barriers from diverse patients from participating in our clinical trials, and also doing a better job with diversifying the clinical trial workforce. And ensuring that we are making clinical trials and educating the information is available for all patients at their fingertips so that they will be able to make these decisions and to help through with the issues of trust.

Jackie - 00:21:46:

Absolutely. Now, Adrelia, if I were in front of you as I am now, virtually, right?

Adrelia - 00:21:55:

Right.

Jackie - 00:21:56:

And I was hesitant about participating in a clinical trial. What would you say to me? To Give me the information I need, not about the specific thing, because we don't know what the clinical trial would be. But how would you assuage my fears about participation? So if you were given the mic, which you are. To say these are some of the reasons why you should consider Jackie participating in a clinical trial, what would you say?

Adrelia - 00:22:33:

So first Jackie, I would want to hear from you where your starting position and understanding what it is that you know about clinical trials. From there, I would begin to share with you why it's important. And why it's important is because we need for the new medicines that are coming to market, we need to ensure that they are safe and efficacious for all patients. By all patients, we need to ensure that for different races and ethnicities, we know that our bodies are different. We break down metabolized drugs differently. And we want to ensure before that drug comes to market, that for someone that looks like you, we know for sure that we have tested this new medication in a controlled environment to make sure that we will know how to... Ensure that when it's on the market, it's administered properly so that there are no harms to any patient. And also, we want you to know that being a part of a clinical trial is at the, you know, It's your option and at any time if you felt that you did not want to participate, you could withdraw your consent and say, I don't want to move forward. But it is an opportunity to help us to advance science and for you to help us to make sure that the medications that are coming to the market are safe and especially for someone that looks like you.

Jackie - 00:24:29:

Awesome, thank you so much for that. That's really helpful, because so many of us are like, “well, do I want to participate in a clinical trial? I don't want to be a guinea pig, I'm not sure”, right? But if we think about the importance of understanding. How that drug affects people that are different, right? It's so important that that's tested on different types of people, different demographics, different age groups. So that you understand how it affects different people before it comes to the market. I think that's so important. So thank you for sharing that.

Adrelia - 00:25:11:

Absolutely.

Jackie - 00:25:13:

Yeah, Adrelia, how do we be, one of the things that so many of us or so many of our families have an issue with is just advocating for ourselves in our own healthcare. How do we begin to advocate for ourselves or for those of us who are caring for children or parents potentially? How do we advocate in the care of our loved ones?

Adrelia - 00:25:39:

Yes, so that is something that is really core to me and for my family members they know I'm always sharing with them do the research, prepare yourself before you're going to the doctor's office and I for my mother. If I'm not there, I can be found on her cell phone with her to kind of help her through that process. So the first part is really by asking questions and prioritizing your questions and your concerns, writing them down because it is a short period of time that you have in front of your healthcare practitioner, but if you're prepared, it helps the visit go much smoother and you have the answers that you need and by all means if you have the opportunity, take a friend, take another family member, because it's better to hearing what the doctor is saying is more helpful than the patient, because the patient is listening to the physician talk about them. Depending on what the diagnosis is, sometimes it's not clear for them to be able to think through what the doctor is telling me about and what do I need to ask. So again, take a family member or someone else with you. I will also, when thinking to yourself or discussing someone why to participate in a clinical trial, ask your profession, you're a healthcare practitioner about if there are clinical trials available that you can participate. And even understanding more about the diagnosis and really understanding what is available for you and being prepared to present that to your healthcare practitioner so that they will know that this is your life and you've done the research and you're coming and you want to know what is available and what options that you can make to really drive your medical journey and not really allowing someone else to make all of those decisions for you. I think you should work alongside with your healthcare practitioner and similarly with my father with his experience with prostate cancer. And for him, he was told he had to take an MRI in for him. That was a trigger for him and for the medical mistrust from Tuskegee and he refused to take the MRI. And me, I had to help him in understanding why the MRI was important, what was it being used for to stage the cancer so that the doctors would know how they could help him as they move forward with his medical treatment and me addressing the core of what his issue was of not taking. And so educating him about why it was important to take it and addressing his concerns about the MRI and the dye and confirming with him that he would not be treated like a guinea pig and that there would be, there are laws in place protecting patients and also clinical trial patients to ensure that, those past atrocities would not occur again. And so we do have to address whatever the concerns are at the root of some of our challenges with the healthcare system. And then one other part I want to say as far as advocating, and I know with culturally within our communities, we tend to hold close or be silent about sharing, what is happening within our lives from a medical standpoint. And I would really like to encourage us to rethink that because there are many diseases that are hereditary based and by not sharing within our families, what are some of these diseases, it prevents the future generations from being able to prepare or make different lifestyle choices that will ultimately help us all be better advocates for our own healthcare.

Jackie - 00:30:37:

Absolutely. Adrelia, this has been an enlightening conversation and an informative one. So thank you so much for that. What is the message that you want to leave with our listeners today?

Adrelia - 00:30:52:

So in order for us to really make an impact and for me to highlight to everyone is that the lack of diversity in clinical trials is not a new challenge. This is something we've been challenged with for years. And we're now at a point where we've seen coming from the pandemic that we really do have to address this. The collective effort of the industry, our healthcare professionals, and most importantly, our patients, are needed to help us to build equity in clinical research and pushing forward solutions to make an impact. One of the things that's going to help us do that is that we have to act with intention. And to address the barriers that are limiting diverse patients from participating. In addition to addressing those social determinants of health so that we can provide access to clinical research and novel medicines for all patients. We want to make sure that what the medicines that are being brought to the market and brought to patients reflect in the clinical trials, the patients that we know will be taking those medicines. So I'm hopeful that with this, there will be an increased curiosity about how can I participate in a clinical trial. And seek for those to seek opportunities and even asking their health care professional, is there a clinical trial that's available for them to participate.

Jackie - 00:32:35:

Adrelia, how can listeners learn more about your work and get in touch with you?

Adrelia - 00:32:40:

So I invite listeners and welcome them to follow me, my journey on LinkedIn.

Jackie - 00:32:46:

This was really great, Adrelia. Thank you so much.

Adreli - 00:32:49:

Thank you for having me.

Outro - 00:32:56:

Thanks for listening to this episode of Diversity: Beyond the Checkbox. If you enjoy the podcast, please take a moment to share it with a friend, leave a rating and review and subscribe so you'll be reminded when new episodes are released. Become a part of our community on Instagram, LinkedIn, Twitter, YouTube, and TikTok. This show is proudly part of the Living Corporate Network and was edited and produced by Earfluence. I'm Jackie Ferguson. Take care of yourself and each other.