Breaking Barriers in Cancer Research & Care

Dr. Nadine Barrett, a medical sociologist, health disparities researcher, and President-elect of the Association of Community Cancer Centers (ACCC), joins us to discuss her remarkable journey and commitment to advancing diversity, equity, and inclusion in cancer research. Dr. Barrett outlines her top priorities with ACCC, focusing on increasing diversity in oncology research and fostering honest, authentic community engagement. Be inspired by Dr. Barrett's transformative vision and work to enable more inclusive and accessible oncology research and care.

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Kathy Mickel 0:00

Welcome and thank you for joining the Society for Clinical Research Sites for SCRS Talks. I'm Kathy Mickel, the Learning Solutions Lead with SCRS. SCRS Talks allows our partners and those who we work closely with to take a few minutes to address the issues of industry concern, share exciting achievements, and learn about our community. Today, we are delighted to have Dr. Nadine Barrett, President elect with the Association of Community Cancer Centers, or ACCC. A medical sociologist by training, Dr. Barrett is a health disparities researcher, expert equity strategist, and a nationally recognized leader, partnering to increase diversity, equity, and inclusion in cancer care. Dr. Barrett, it's a delight to have you with us today. If you would mind sharing a little bit more about your background with our listeners.

Nadine Barrett 0:56

Absolutely. And thank you so much, Kathy. And thanks for having me. I'm really excited to be here for a number of reasons, but just so I tell you a little bit about myself as you've asked. I am Nadine Barrett. I am professor in the Department of Social Sciences and Health Policy at Wake Forest School of Medicine. Senior Associate Dean for Community Engagement and Equity in Research for Wake Forest, again, the School of Medicine and Atrium Health. And I'm really excited to also be the Associate Director of Community Outreach and Engagement and Chief Community Engagement Officer for the Cancer Line, Atrium Health, as well as Wake Forest Levine Cancer Center and Institute. So I'm really thrilled about that. I'm really excited to be here. And most certain when I think about the work that we do and the focus that we all have, including this whole podcast is really about advancing equity and ensuring that every patient and every member in our community gets to know and be aware of and get access to the best care possible for them. And that's available nationally and globally. So again, just really excited to be here.

Kathy Mickel 1:57

Thank you so much. You've had an impressive career and, and you hold multiple leadership roles as you've just shared Can you tell us more about your journey in oncology and healthcare leading up to your role as ACCC's president?

Nadine Barrett 2:12

it has been quite a journey, one that I'm very excited about and proud of. And it's certainly been a journey that I cannot say would be not as full and robust if it was not for the community partners that I work with, my awesome colleagues. that I've worked with over time and the patients who really inform the work that we do and I do every day. And so my whole history really, in terms of how I got to this space oftentimes when people ask me this, I actually go all the way back to my mother, my grandmother, and probably that's not what you're thinking about right now. But they certainly are two of my greatest that have been two of my greatest mentors throughout my entire life. And really understanding the importance of patient care, the understanding of diversity and also recognizing that disparities exist and they're very real, and they have very real consequences, particularly in the context of race, ethnicity and other minoritized and marginalized groups. And so that really shapes all that I do, in fact, and it's really shaped me to have this incredible career starting off in breast cancer, actually with Susan G Komen for the Cure is where I started in oncology. I started there locally in North Carolina. As the director of community programs, really ensuring that underserved populations got access to breast cancer care and then move into the global headquarters where I focus then again on community programs and helping affiliates across the country and sometimes even globally to be able to really think about how to address the needs of their communities, particularly those who are underserved. And then from there going to Duke, it was awesome because I got to start the Office of Health Equity there. Starting the office of health equities was one of the most greatest joys because it was started again with the patient community researcher and providers voices that created the strategic plan that led to a robust platform of community engagement and a platform for that and partnerships as well as, really working toward increasing access to clinical research and trials at Duke. I've had many other roles at Duke as well, but I won't spend much time on that. But it all really again speaks to community engagement, ensuring patients get access to the care that they need when they need it and timely quality care and then third, ensuring that we increase diverse representation and clinical trials and clinical research. And then from there you know, I'm now at Wake Forest and I just really excited. I'm excited. I'm as I said, the senior associate dean of community engagement and equity and research and also being chief community engagement officer for the cancer service line within the cancer center, as well as associate director of outreach. If you think about all those titles, you can see that there's two key things that plays out equity and research collaborations to improve cancer care. And so that's kind of my journey. In the midst of that is the powerful time that I've had with ACCC. I started with ACCC. I started engaging with them since 2016. And now we're in 2023. And so it's been seven years of really collaborating with them. First, I actually wrote a paper about the Office of Health Equity and the Cancer Institute at Duke. And then I started getting more involved in volunteering with them, serving on their board and serving on their. On specific committees as well. And all the way now to being a part of the executive committee of the board and now president elect. But I will say that one thing that ACCC creates is an opportunity to really understand and think about the interdisciplinary and multidisciplinary teams that make up cancer care. And when we say care, well, I'm talking all the way from outreach to screening, treatment to survivorship and end of life and palliative care. And so I think that one of the most beautiful things about working with ACCC and being a volunteer and, and my role here as president elect, which I'm, I'm honored to have is to be able to make that kind of difference to address disparities across the board in all these other areas from care to access to research. So that's my story and also how it really fits lovely with the work and the opportunity. To serve the membership of ACCC.

Kathy Mickel 6:12

Well, I really appreciate you sharing your story. I think, you know, even your reflection of going back to your mother and your grandmother's influence in that obviously they had great impact to the amazing path that you've had thus far. One of the things that you mentioned was your work at Duke cancer. And I think if I recall just ask was. A program that you did and it was recognized by a triple C, right? You won an innovation award Right. So last year, you were nationally recognized for Just Ask, Increasing Diversity in Clinical Research Participation. This course at Duke Cancer Institute. Can you tell us more about some of the key objectives and accomplishments of these initiatives in promoting health equity and diverse community participation in cancer care?

Nadine Barrett 7:00

Yeah, absolutely. And that's a great question. And so I'll say a couple of things about just ask. And I'll also say Two key things about ASCO and ACCC and the partnership that they formed. That partnership between ASCO and ACCC was so pivotal. Between Randy Ory, who was the president at the time of ACCC, and Lori Pierce, who was the president of ASCO at the time. Both dynamic people who really wanted to focus in on increasing diversity in clinical trials and putting equity at the center. And so through this partnership of these two phenomenal organizations focused on cancer really created this task force and this task force led to recommendations that people can now find that's been published specifically around increasing diverse representation in clinical trials. But they went one step further, not just making recommendations, but also. Getting involved in two particular programs one around assessments led by Carmen Guerrero which is phenomenal in terms of helping teams to understand what is it about their bias or what is it that made them not ask a patient to participate in a clinical trial. And then the second arm that they focused in on was creating a training around implicit biases, which we found from work done at University of Alabama and others. That have really highlighted that implicit bias actually does play a huge part in cancer trials in who gets asked and who doesn't and the reasons why they don't specifically in that context. And so just ask actually speaks to that. Just ask is an implicit bias training specifically situated within the context of systemic and structural racism, recognizing. How all of these factors that govern that live social institutions actually play a key part in people getting access to any social, any type of service really. But particularly in this context, cancer care and clinical trials. And so it was a great opportunity to think about, just ask there's some key objectives to it. I thought about it. I'm a sociologist. So of course, as a sociologist, I think about how all of these different institutions and society and culture norms interplay to impact how we act and react in situations, whether it be interpersonal, whether it be between a provider and a patient in all of those areas. And so what I do is use this process, if you will, to walk people through that to first kind of recognize or see that we all actually have implicit biases recognize that those implicit biases actually do play out in disparities, healthcare disparities. And there's a lot of connections to that both in cardiovascular and also in the cancer space as well. And then those inequities or those disparities then lead to also the way in which we interact and ask people to participate in trials. So my thought before those studies came to the forefront was always that if we know that implicit bias happens in the healthcare setting, Why would we think it doesn't happen in the clinical trial setting? Of course, absolutely. And so that's how that came about. And ASCO and ACCC really took that and move that forward. And now it's available on the website. So actually oncologists, people in the cancer space can be able to go through this training. That's the NMS module. It's also available in person. People use it that way as well. And it's now also disease agnostic. So now it's available to all diseases as well, including pharma and industry. So just really excited to see how this this training program has really had a great impact. And it all started with my training in grad school. And that was many moons ago, just so you know, Kathy.

Kathy Mickel 10:25

Well, it, and it really shows, right? So just the simple title, just ask really implies this opportunity to connect with people, to bring the human element into this as you've talked about a lot around community engagement and equity and this whole continuum, it's about. Making connections and having relationships and just, you know, getting to the heart of being human in these clinical trial settings.

Nadine Barrett 10:51

Absolutely. And can I just add a piece to that? Cause I loved how you summarize that. It's just ask is interesting because it's about just asking the patient, but it's obviously we know we can't just ask, right? We've got to also then ask ourselves, what are our biases? What are our perspectives? What are the factors that stopping us so that we're not even thinking about the blind spots is stopping us from asking that person to participate in the trial. So the just ask actually goes both ways. It's asking the patient, but also asking yourself, where are my blind spots? What are the things that I need to do differently? And then as an institution, Ask yourself, what are the barriers that we're creating that's stopping the diversity that we need to have in our clinical trials? We're stopping people from getting access to potentially life saving or life enhancing treatment through a trial. We're preventing that. So what are we doing that we need to stop? So the just ask actually goes both ways. It's not just asking the patient, it's first asking us as institutions, as researchers, as providers, what are, where are our blind spots and how can we be different to ensure we're giving the best care possible?

Kathy Mickel 11:56

Brilliant. Clearly that is why you won the innovation award for that program. As the new president of a triple C or president elect as of right now, what are your top priorities and initiatives that you plan to champion to benefit community cancer centers and their patients?

Nadine Barrett 12:14

That's a great question. So, as we've discussed, right increasing diversity in clinical research and trials is definitely a priority to me. My other priority, which goes in tandem, I would probably actually say primary, is ensuring that we're engaging our communities and patients both as experts, advisors, and consultants, as well as participants in trials. And so, I think that sometimes we kind of put them in this. I to get them to participate. But actually, every research study that I've done or have been successful in doing our projects without the patient and community partners, and I call them my community colleagues without them engaging with me and working together toward that change, my work is nowhere near as excellent as it can be without them. So I think that that's always an important part. And so that that theme. Is actually going to drive where I'm thinking of going in terms of a priority for us as a triple C is ensuring that we think about what does engagement look like? What does patient and community engagement when you look like and how does it impact access to quality care and clinical and quality research at Duke? I was leading this program called Project Entrust and Project Entrust is really asking the question, how does Duke become more trustworthy in our delivery of health care and our delivery of research, our engagement in research with our communities? And the reason why it's changed is because we always ask, how do we build trust in the community? What do we need to do? The problem, the number one reason for health disparities, often quoted in almost every study, is we've got to address trust. And my question is, and many of us ask, how do we become more trustworthy? You earn trust, you don't just get it, right? And so that work has really led us to identify through a survey that we did with our community within a little over a month, 6, 243 people responded to a survey where we specifically asked questions around racism, discrimination bias, ways in which people felt that they have not been heard or listened to, and we've learned so much through this process at Duke, and now we're utilizing that data again with our community to develop action items and action steps toward improving the quality of our health care and the way in which we engage our patients and our communities, particularly those who are marginalized and minoritized. So I think that. When I fast forward now to what we're doing here and with a triple C really thinking about how do we create and ensure that our institutions are being trustworthy, and that requires honest, authentic community engagement, patient engagement as critical parts. But oftentimes people don't know how to do that. People often ask, how do we do this in our community? What does that look like? And so, as ACCC is well known and I take pride in this, even though ACCC is in its 50th year at this point ACCC is really the how to organization. So, my goal is, how do we meet cancer centers where they are? With realistic expectations. Not every cancer center is going to have some big clinical trial in their cancer center, right? But how do we ensure that we meet the way they are? And part of that is engaging them and understanding as the membership. What is it that you need? And what ways can you engage in a clinical research study? What ways can't you based on your infrastructure and what's needed to be able to make that happen? that happen at whatever level you feel most comfortable with, without it becoming an administrative burden to you. So that's one. The second is, how are they engaging their communities, ensuring that they are they're operating in a way that is most trustworthy to the most marginalized and minoritized populations in their area, in their region. And so I really see that as a key part of what we're doing now for Asia Pacific. And it follows my focus and what I've always been passionate about, and I think it's critical because it keeps the patient in our communities center in the work that we do in delivering the best cancer care available.

Kathy Mickel 16:03

That's really wonderful. I, I love this idea of asking how we can do it, right? There's been many years of discussion of diversity and equity and inclusion, but now we've really got to get to the point of putting action and, and our community sites are asking that question of how so how can our clinical research community sites engage with ACCC's initiatives and resources? Where, where can they go to find out more and to really put, you know, action to the how?

Nadine Barrett 16:36

Yeah, that's a great question again. And so one of the key things that a triple C has, and as I mentioned before, is the how to organization. So I would encourage anyone listening to go to our website and a triple C our website sign up. And once you sign up, you'll be amazed at how much resources you'll have readily available to you, including PUSK, podcasts, information about navigation, financial toxicity, end of life care, you name it, we have it there. And so I would really encourage you first to do that. The second is to become a member. If your cancer center is not a member of ACCC, the benefits that we have as being a part of this membership is outstanding. So I'd encourage any cancer center to encourage them and their leadership to join in and be a part of the A triple C membership. The other thing is to come to our conferences. Our conferences are phenomenal. They're dynamic. the focus and the attention is everywhere from the business operations, part of the clinical care and the cancer team to the nurse, the doc, the clinicians, you name it. And those who are doing research. Our conferences really cross over the gamut of everyone who is part of the cancer care community, providing care for patients. And so again, I really encourage people to attend that. It's very practical, hands on, and it's the kind of conference that allows people to ask questions, that when they leave, they know that they've Some great nuggets that they can take back and put into up into practice immediately when they get back to their their home sites. So I think those are some key things that will be really important for people to know about a triple C and how they can be able to learn more and get access to some incredible resources.

Kathy Mickel 18:15

Thank you, Dr. Barrett. It's been really a pleasure getting to know you and hearing about your background and the incredible work that you're doing within the organizations that you're working as well as ACCC. So thank you so much. We look forward to hearing more. Thank you to our listeners and make sure you register for upcoming summits being held throughout the year by visiting our summit page. While you are on our website, check out our other SCRS publications and resources for the community in the publication section we appreciate your participation in today's program and look forward to having you join us for more great content. Thanks for listening.