Caitlin Whyte (Host): Here at Maimonides Medical Center, we are committed to ensuring our patient care research and treatment are inclusive. And here today to talk about what that means and how it's being implemented are Nekisha Killings, a lactation consultant equity strategist and Maternal and Child Health advocate, and Dr. Josh Feinberg, a surgeon specializing in breast surgery.

This is Maimo MedTalk. I'm your host, Caitlin Whyte. Now, inclusivity is so important, but it is also such a big word. So, I'd like to kick off our conversation today by asking each of you, what does inclusivity mean to you? And I'll start with you, Nekisha.

Nekisha Killings: Sure. So, there's a lot of terms related to inclusion that we hear. In my field, we used a larger phrase, JEDI, quite a bit, which is justice, equity, diversity, and inclusion. And they all mean a little something different, whereas we would say justice breaks down barriers, and equity recognizes the barriers that are in place and tries to level out the playing field, if you will,. Diversity, of course, means being represented by all different voices. Inclusion is really unique. And this is not my own, I give credit to Dr. D-L stewart, because there's a whole chart that they put out regarding what inclusion looks like in relation to the other terms.

But I live by this particular definition of inclusion, and it says, inclusion asks, "Has everyone's side been heard? Is the environment safe for everyone to feel like they belong?" And it asks those questions because its aim is to embrace and celebrate and center all the overlooked groups and perspectives. And that really captures what inclusion is to me.

I love that and thanks so much for sharing.

Host: And Dr. Feinberg, what does inclusivity in your work mean to you?

Dr. Joshua Feinberg: First off, I'll just say as a Star Wars fan, I definitely enjoy the JEDI definition of inclusivity. So thank you, Nekisha, for that. For me and in my daily practice, you know, it's very clear that the ways in which one patient experiences her breast cancer diagnosis can be extremely different from another patient with the same exact diagnosis. And taking it a step beyond patient experience, we know that there are actual disparities in outcomes, not just in the United States, but globally as well.

So when I think about inclusivity, I think it's important to reflect on what drives these disparate outcomes, whether it be social factors and access to care or biologic risk factors, such as one's genetic makeup or their country or geographical origin, they're maybe multifactorial. And that's what we see most commonly. And so, it's helpful to consider these factors for me when seeing a patient in the clinic, but also when conducting research studies.

Host: Gotcha. Thank you so much for your answer as well. Now, Nekisha, when we talk about inclusivity, I feel like we often talk about it from the point of view of like an institution, from the top down. But how does this work truly benefit our patients and our providers?

Nekisha Killings: I love this question. So, my work is really, you know, boots on the ground. I'm a community private practice lactation consultant. Clinically, that's my work area. And so, I am seeing families in their homes, often in community spaces, supporting them on their breastfeeding journey. Inclusion for me, for lack of a better phrase, just to flip your phrase top down from the bottom up, if it were, from the community up, really talks about considering the patient's perspectives, their bodies, their lived experiences, and how they are completely, completely individual.

It really is about teaching each of us who does this work to consider that the person in front of you is nothing like the person you saw five minutes ago, five months ago. Everyone's experiences are so unique as are their bodies. And the way that things may present on one body can be completely different from how it presents on another body. And we have to remain open to those various presentations in order to be of best service, to provide optimal care to the folks who need us.

Host: Yes, absolutely. And Dr. Feinberg, how do we bring inclusivity into our clinical research as well?

Dr. Joshua Feinberg: Yeah, I think that it's a great question, and there's certainly a need for this. You know, I think one of the reasons that we have limited racial and ethnic diversity in our clinical research is not necessarily because of exclusion criteria, but more that we're not actively including patients. And in the US, this is really a product of a history that's multifaceted in clinical research and health inequities, particularly things like the Tuskegee experiment. And these have given patients pause or doubt when entering clinical trials.

So, what's most important is educating patients on what a study can offer, what are the risks and benefits. And at our institution, our clinical research staff really is excellent at addressing patients' questions and also constantly looking to enroll patients from various backgrounds onto clinical trials. You know, we do have good data to show that clinical trial enrollment increases as patients are educated more and are actually asked to participate. If you don't educate and take that step to bring studies to patient's attention, they will never know. And of course, you won't have diverse enrollment in these trials. So really, education is key.

Host: And Nekisha, from your point of view, how does this commitment and inclusion make teams like Maimonides better providers?

Nekisha Killings: Well, first, I'll give kudos to the Maimonides team. As Dr. Feinberg said, there's already so much great work going on. You all already are looking at this through the appropriate lens and making sure that you're considering those folks who haven't traditionally been considered in clinical research and otherwise. That means everything.

My short answer to this question would be better equipped and better informed providers are more competent, full stop. This really is about competence and that comes from having a broad breadth of experiences or at least points of reference, at least having been exposed to a number of varying presentations and lived experiences and bodies to be able to not be put off by, surprised by, when you encounter someone who maybe doesn't look, as your previous patients did.

And so, I really love everything about what Dr. Feinberg said in the previous answer. I'm so impressed with Maimonides' approach and continuing to make sure that you're centering and including and pulling in those folks who are traditionally really been just kind of overlooked, intentionally or otherwise. What I'm hearing is Maimonides is being intentional about making sure that they pull those folks in. And surprisingly or not, folks really do want to take part in having their voices heard and having their experiences included in the research. People feel it really is an honor to share their stories and even to be asked, if only we would do more of that.

Host: Of course. I love this intentionality that you both are mentioning. It's such an important part of this conversation. Now, Nekisha, I'd love to now turn to your initiative, the Melanated Mammary Atlas. Can you tell us why and also how you developed this?

Nekisha Killings: It's a long and sordid tail. The shorter version, I won't promise it'll be short, but the shorter version is, you know, I've been doing this work supporting families in the community for, you know, over a decade, about a decade and a half, if we're being honest. And from my very first encounter with breast care and lactation support and community support of parents who are looking to just feed their babies however they can, it became apparent to me that our education and our points of reference that we had as clinicians in the field were really, really consistently only showcasing how things presented on one particular skin tone, on one particular set of bodies, and I didn't have enough points of reference, enough examples of the varying presentations of conditions.

And so, this became an ongoing conversation over years, literally lactation consultants in the field contact one another, "Have you seen mastitis on darker skin? Have you seen this present? You know, what does it look like?" And we're cobbling together, you know, stories and trying to piece together solutions based on, quite frankly, those of us who are folks of color, what we know things look like on our bodies, how they present in our bodies, and those who are family members and friends and bodies we've seen personally in trying to educate those of our colleagues who didn't have that experience.

And so, I was asked to talk about this on a global education platform. And once I did that, it really lit a fire. I began to get contacted from all over the world from people saying, one of two things, "Can you please teach my institution that just because they didn't see this thing on this parent it doesn't mean it wasn't there?" And the other side of it was, "Here I want to send you a picture of how this thing looked on me, so you'll just have it in your, you know, trove of images."

And so, I kind of put those two things together into creating a solution that would be accessible, I would be lying if I didn't tell you, I thought it would be a Google spreadsheet or something really basic. But as it began to really develop and come into life, it took on a life of its own. It really organically grew and continued to expand as more and more supporters came on board. We have, you know, a fantastic tech team who helped to build this as it began to really morph into what it was becoming. We knew that we really had our hands wrapped around something. And in the end, now it's a resource, a web app, if you will. So, it's available, whether you download an app or just access it from the internet. No matter where you are in the world, you can see the images. And more importantly, patients and providers around the world can upload their own images to say, "Hey, I want to contribute to really expanding what's available for providers to learn from. I want my body to be in that number of images that folks can see." And that's the shorter version of how we ended up with the tool we have today, and it continues to evolve as well.

Host: Well, I'm so glad to hear that it has grown to more than a Google spreadsheet. Thank you so much for sharing, Nekisha. And Dr. Feinberg, I understand that you work with the Melanated Memory Atlas as well. Can you tell us about your part in it?

Dr. Joshua Feinberg: Yeah, absolutely. So, we came across the Melanated Mammary Atlas through a study that I led here at Maimonides. We found that in our practice as breast surgeons, that we frequently encounter patients with cutaneous or skin manifestations of both benign and malignant breast pathology. And to lead to the most effective diagnosis, and this ties into competency as Nekisha mentioned earlier, is really to be aware of how these skin manifestations appear on dark versus light skin. And believe it or not, and unsurprisingly, they really do have different appearances. And to lead to the most accurate diagnosis, a provider has to be aware of the various appearances of these pathologies.

So, to put a more objective look on this and to get some data behind it, we reviewed 20 breast disease textbooks with over 550 photographic images of patients with various breast disease. And what we found was that over 95% of images depicted patients with light skin color, while only 4% of images were dark skin color. So clearly, the demographics of breast disease and breast cancer specifically don't match this distribution that we found in textbook images.

And once we saw the data and we knew it was an issue, but we're quite surprised by how staggering the numbers were, I started to look at what is out there, what opportunities are there to educate providers and medical students on the various appearances of this breast diseases. And that's when I came across the Melanated Mammary Atlas and Nekisha. I then reached out to her and we started a conversation about ways that we can raise awareness for both providers and patients at Maimonides to get images on to the app and to make patients aware of this excellent resource where they can see something on the internet and say, "Wow, it echoes with me. I see that. That's something that I have." It really just increases education and awareness throughout my practice and all of my colleagues practices.

Host: Well, just some really important and incredible work that you two are doing to ensure not just quality, but equitable healthcare to all your patients and clients. Thank you so much for joining us today on the show. To make an appointment with the Maimonides Breast Center, call 718-765-2550. That's 718-765-2550. Follow us on social @maimohealth. And find more information about the Melanated Mammary Atlas at mmatlas.com. If you found this Maimo MedTalk podcast helpful, please share it on your social media channels. And to listen to additional episodes of Maimo MedTalk, please visit maimo.org. Thank you so much for joining me today on Maimo MedTalk. I'm Caitlin Whyte.