Equity Beyond Intentions: Turning Research, Community, and Accountability into Impact – ep.181

In this episode of The Jali Podcast, Melyssa Barrett sits down with Dr. Eugene Manley, Jr., Ph.D., MS (  / eugenemanleyjrphd  ) , a biomedical scientist turned social impact leader and the Founder & CEO of the STEMM & Cancer Health Equity (SCHEQ) Foundation (https://scheq.org/) . His work challenges us to move beyond performative commitments toward real accountability and community impact.

Dr. Manley brings over 20 years of experience across engineering, molecular and cell biology, nonprofit strategy, and workforce development, with leadership roles at organizations like AACR, LCRF, and LUNGevity Foundation. His work is deeply informed by personal experience, growing up first-generation and witnessing loved ones navigate dismissive, fragmented care. After experiencing medical racism firsthand during a hospital stay, he made it his mission to build systems where no patient’s voice is sidelined.

Dr. Manley shares insights from his research on structural inequities and discusses his work with the Scheq Foundation, where research, advocacy, and lived experience come together to drive meaningful systems change. This conversation explores how inequities become normalized, why community-centered approaches matter, and what leaders, institutions, and individuals must do differently if equity is going to be more than a buzzword.

Through SCHEQ, he now drives cross-sector collaboration across payers, pharma, and health systems to close gaps in screening, biomarker testing, clinical-trial access, and survivorship, especially for Medicaid and historically marginalized populations.

This episode is for educators, nonprofit leaders, policymakers, advocates, patients, and anyone seeking a deeper understanding of what equity looks like when it’s rooted in people, power, and accountability.

In this episode, we discuss:

  •  How systemic inequities are created—and sustained

  •  Why community-centered equity produces better outcomes

  •  The role of data, lived experience, and trust in systems change

  •  What accountability really means in equity work

  •  How listeners can engage in more meaningful equity action

Check out his blog at https://scheq.org/blog and stay tuned for Part 2 – Episode 182!

Melyssa Barrett: Welcome to the Jali Podcast. I’m your host, Melyssa Barrett. This podcast is for those who are interested in the conversation around equity, diversity, and inclusion. Each week I’ll be interviewing a guest who has something special to share or is actively part of building solutions in the space. Let’s get started. Welcome to the Jali Podcast. Today’s conversation is one that really matters because it’s about people, communities, and the systems that shape opportunity long before most of us ever realize it. I’m joined by Dr. Eugene Manley, a scholar and equity advocate whose work focuses on understanding how inequities show up in real life and what it actually takes to change them. Through his research and his work with the SHE Foundation, Dr. Manley works alongside communities to turn data lived experience and advocacy into action that creates lasting impact. This isn’t just a conversation about systems, it’s about people accountability and what equity looks like when it’s done with not for communities. Let’s jump in. So I am just so honored and pleased to have met you, Dr. Eugene Manley, and I’m just excited to have you here. So I’m just going to dive in and talk to you a little bit about your own human context because I know you’ve done a lot of research in the space. And before we get to some of that, I would love to maybe ask you a little bit about some of your own personal experiences that kind of shaped your commitment to equity and system change.

Dr. Eugene Manley, Jr: Thank you so much for having me on the show. It’s an honor and a pleasure to be here. You’re doing such phenomenal work and really trying to uplift people from our community and really highlighting how they’re helping others. A lot of the work that I’ve done has been formed just based on how I grew up in Detroit and what I observed. I grew up with chronic conditions. I was a chronic asthmatic. My father was a heavy smoker, and even though he was out of the house after I was three, we always knew where he was. And I have a hunch that all of the smoke exposure made me have so many chronic allergies, and it probably also made me have a lot of the anaphylactic allergies, even though not directly, but there’s a strong link between asthma and allergies. And I was in the hospital up to 30 times a year until I was 10, and I’ve had anaphylactic allergies my whole life, and some of it is older fish, seafood, shellfish.

Some of it is ingestion of tree nuts and some of it is seasonal. And so it’s always been a challenge just navigating life and trying to make sure I don’t die. And then looking at how healthcare was delivered to my family. My mother had it rough growing up and just seeing how hospital systems treated her as she was in and out of the hospital at different times. And they treat you worse if they think you’re poor and uneducated or think you don’t have great insurance, they don’t think you have money to sue them. And so a lot of that just drove my desire to really try to understand medical systems and medical care and try to advocate for people to get care that they’re entitled to.

Melyssa Barrett: Wow, that’s awesome. I know my husband, speaking of the link, he had a ton of allergies and he was asthmatic, and so there would be places we would go, you think you’re going to a party? And I’ll never forget, we walked into somebody’s house and there was no dogs or anything that we could see, but he started having an asthma attack and it was like, I’ve never seen, it was like something is going on. And then we found out later she actually had a dog, so we didn’t even know what was going on. So it can be just traumatic in terms of your allergies then propel into an asthma attack. I mean, it’s kind of crazy.

Dr. Eugene Manley, Jr: That is the worst. It’s bad enough to have the asthma. When you have allergies that trigger your asthma or anaphylactic allergies, it is so much, much, much worse. So I really worry for all those people with peanut allergies. I mean, I have an aromatic allergy to fish. Seafood is selfish, but I am so glad I don’t have a peanut allergy and I’m not even being facetious, they, you can’t even have a particle of it. So I mean, my life is bad, but I feel really, really bad for them.

Melyssa Barrett: Yeah. So then was there specific point in time when you realized that the work wasn’t optional for you and you were like, I need to move in this direction and really study this?

Dr. Eugene Manley, Jr: You know what, I don’t know if there ever per se was, I just knew I was in the hospital a lot until I was 10. I was used to needles and then I always had an interest in biology, always had an interest in engineering. And I originally had wanted to be a biomedical engineer. And then I just started my, but high school department head was my biggest influence on my science career. And she helped me get my very first biomedical research job at the Michigan Cancer Foundation. And they had a summer internship program or I think, and I was in end of 11th grade. And once I learned that there were research programs out there, then I was hooked. So I learned that you could apply for this. So I started applying for research programs every summer. And even though my undergrad was in mechanical engineering, I spent every summer trying to go to different places to do biomedical research. So I think at that point when I think when I learned there were these opportunities, I just ran with it.

Melyssa Barrett: Wow, that’s awesome. Well, and thank God you did. So now you’ve been doing a lot of work when it comes to inequity advocacy. There’s so many things that I think a lot of people take for granted. And so maybe you can talk about maybe one insight from your work that most people maybe misunderstand or haven’t been taught. Is there something,

Dr. Eugene Manley, Jr: The easiest thing that I didn’t even really talk about in our prep call is a lot of people don’t realize that in the sixties, seventies, we did not have really a lot of women in biomedical research.

And also that meant we didn’t have a lot of research that impacted women, but we were developing all these drugs based on what a lot of white men thought were relevant. And then this comes into play later when you have things like DDT and all these different birth defects. And then this is all before the revitalization act, which said that you have to include women in clinical research and clinical studies. And this is so important because it sort of parallels what we see about a lack of representation and diversity in the workforce. If you don’t have people from this group that is experiencing a disease, how are you ever going to have things that impact them? But what people don’t really know at a deeper level is that there are fundamental differences in male and female livers. And this is regulated by growth hormone signaling from the pituitary. And basically women have more regular growth hormone signaling patterns, and men is more every four hours or whatever. And this directly affects how some of the drug metabolizing enzymes and the liver are activated and functions. And so there are some differences in enzymes in the liver in women versus men, and this could directly impact drug metabolism, drug sensitivity. And so this is something that a lot of people do not know.

Melyssa Barrett: Oh, I sure didn’t know it. So that’s enlightening. Interesting. So then when you start examining inequity through that data and systems lens that you’re talking about in terms of all your research, where is the biggest disconnect you think between policy intentions and kind of those real world outcomes?

Dr. Eugene Manley, Jr: Well, I think the biggest disconnect is who is doing the research? What samples do we have? Who do they come from? And if you think about it, that ties into who was in the workforce. Because inevitably when you don’t have people from the group that has the disparate outcomes, then the work on those groups, it becomes deprioritized. And then when that happens, you miss a lot of the nuance, a lot of the genetic differences, the epigenetic differences, and then these people still never have therapies to come out. We have a lot of the stuff, and without trying to get super technical, we have several genome databases and they have a lot of data that’s based on European populations, and then they’ll set that as the reference genome. But how is the reference genome going to work in black and underserved communities when that’s not a reference genome?

And even if you look across Africa, there’s fundamentally different genomes across Africa. So it’s really, really hard that if you have one data set and saying that’s the norm, and everyone goes and studies that, well, then we keep perpetuating the issues. And if we look at a direct example, we talk about lung cancer, and we know lung cancer has been leading a lot of the precision medicine and therapeutic development. But I worked with the group and we published a paper maybe two years ago, maybe three years ago, and we just wanted to ask how many cell lines were out there on lung cancer that represented diverse groups? And we found that 800 cell lines about 390 were from Asian individuals, 200 were from white, only 31 were black and none were Hispanic, native American, Alaskan native, or other Pacific Islander. And of those lung cancer cell lines that were from black, only one non-small cell lung cancer cell line was from a black individual. So mind you think of all the drugs that are often developed on cell lines that are often derived from patient samples, but we only have one cell line in non-small cell lung cancer from a black person, then how are we ever getting therapies out that are impacting these communities? And that’s always what I pushed and advocated that we have to not just be thinking about the clinical trials, that we don’t even have the starting material to develop appropriate therapeutics for those of high incidents of disease.

Melyssa Barrett: Wow, that’s so impactful. I know I was watching something the other day, and I know Representative Jasmine Crockett was talking a lot about what she’s done, even just to work across the aisle to make sure that research actually includes diverse community. I think a lot of times there seems to be intention, but at the end of the day, often we don’t see even the participation, just even from our community. If I think about African-American community, there have been so many things that keep people from participating and then we don’t realize how that impacts us further down the line. And so when you think about the inequity essentially gets normalized because we’re not there. So then it’s like, okay, here’s the drug or the therapy, but it affects so many different systems, whether it’s in education or economics or some of the social systems. How do you think we can best advocate as we go into those things?

Dr. Eugene Manley, Jr: I think it’s really important for those of us that have knowledge and skills to try to make sure we keep educating those of us that don’t have access or awareness. A lot of this stuff is these disparities didn’t just happen overnight. We historically have underrepresentation in research, we have underrepresented in the workforce. We don’t have samples that reflect people, and those aren’t really going to change overnight. But what we can do is try to get information out to people. So part of the work I do at the Shack or STEM and Cancer Health Equity Foundation is to create infographics that break down basic medical information and cancer information as well as making. So a lot of times, if you read my chart, it’s very jargon heavy, very technical, people can’t read it. And my mother used to get frustrated. She could never in instructions would be on page five, but she’s trying to read jargon.

And so my chart was never really meant for patients to read. So I said, well, what can we do to start trying to simplify this terminology to fifth to eighth grade level so that people who don’t have access and understand it? So we do medical terms, we do cancer, we do generally infographics on a cancer and being a disparity in that cancer. And we’re just trying to lay a whole set of informational infographics as the Frame Foundation. And then as we get more funding for the nonprofit, we ideally want to then build out a whole series of infographics on lung cancer and then breast cancer. But we’re just trying to lay foundational materials to help level set for people before we go into building other stuff. And the idea is that then once we have enough materials, then we can create targeted curriculum around clinical trials or basic research or different disease states. So that’s part of the stuff that we are doing.

Melyssa Barrett: Okay, that’s awesome. Well, and since we brought up the Check Foundation, let’s talk about that a little bit. I do want to talk to you about some of the advocacy and even the AI component because when you start talking about people’s charts and information, there’s all this AI stuff out there, and I think what’s unique about the shek Foundation that you were telling me is that you’re really bringing all the stakeholders together. In a lot of cases when you’re having conferences and summits and things, you actually have patience there. Can you talk a little bit about what inspired the creation of the Shaq Foundation and what problems were you trying to address that weren’t being solved?

Dr. Eugene Manley, Jr: Hopefully you can get designed in less than four minutes. The biggest thing that led me to create the SHE Foundation was a combination of that lived experience growing up poor first gen and just seeing how my family was treated, navigating care. As I navigated academia, I saw a lot of places at the time that wanted diverse scholars, at least in paper, but then they didn’t really want to listen to you. You still had to ascribe to what their version of norm was, and then you could not really talk about particular systemic or structural issues you may have been facing because while they say we’re a safe space, when you are unfortunately a minority person in a space, oftentimes anything you say can and will be used against you. So you have to really be cognizant when you’re a space about what you say, how you frame it, because you don’t want to get labeled.

But a lot of times the scholars wouldn’t. I knew a lot of people that were not getting help getting their grants written or funded. I’ve heard of scholars that had a grant funded, but then their professors took it and gave it to their favorite person, and this is perpetual. So then what happens is we have people that have advanced training that ended up leaving academic. It was just frustrating. And so I wanted to partly help scholars know how to navigate their degrees, their career transitions, and help them get into the workforce. And then that the whole third piece, which is all health literacy, health equity, is that kind of born later out of as I transitioned to the nonprofit space,

I worked at a big American Association of Cancer Research Foundation, and then I worked at two lung cancer organizations. Now, mind you, my PhD was in lung cancer, but I was not thinking about disparities at the time. But then as I got to the lung or some of the black and Hispanic patients started reaching out to me to ask me to speak at their community events and develop content and programming around disparities that they are facing. And since I already had a background in lung, I said, okay, this is something I can do. And then that whole, remember we talked about that cell line piece

That partly was a precursor to me founding the organization because what we wanted to do in parallel was develop a lung cancer conference that focused on underserved communities and bringing together the patients, researchers and clinicians to learn more about the disease, learn more, how to advocate and learn who is actually working on their behalf either locally or nationally so they can refer someone because black patients often don’t get those resources. And then the other side is having the researchers, clinicians, payers, hospital systems, pharma, et cetera, come into the space and talk about what solutions there are all creating that are removing these barriers, removing these inequities and or improving outcomes. And only you can only move forward when you bring both of these groups together in the same space. If you have just a patient event or just a research event or just clinician, then you have fragmentation and then the message is not getting and percolating the way it needs to. So those things that together led me to create the SH foundation, which is about getting more diverse kids to know they can go in the STEM early ages, helping them navigate those degrees and degree transition and then getting information or resources out to patients, whether it’s the infographics or the lung cancer or the summit, but really trying to bring together, amplify their voices so they can be seen and heard, and then know how to navigate care.

Melyssa Barrett: That’s fantastic. Let’s pause for a moment. We’ll be right back. I love that you are focused there. I mean, it’s such, so for those folks that are interested in learning more about the Shq Foundation, where can they go to get information regarding it?

Dr. Eugene Manley, Jr: These places? Our website, which is HCCB, sche, S-C-H-E-Q, it’s like pronounced Shrek, but without an R, but there’s a C in there, and that’s part of the acronym.org. And you will find a lot of information on our programs, our infographics there slowly coming out. We are starting to get our webinars, we’re starting to get the podcast. I’m on slowly. We’re getting all this stuff on the website just trying to be, we want in essence be a go-to resource or starting resource of anyone on their educational or cancer journey. So we’re trying to slowly layer in the materials.

Melyssa Barrett: I love it. I love it. Well, there’s been a lot of cancer in my family, so this is kind of close to my heart for sure. Are there any lessons that you all have learned thus far about as you’re building trust in the communities and in the space? Because typically what we’re kind of usually over-researched and under-resourced in some cases. So have there been any big lessons you’ve learned so far?

Dr. Eugene Manley, Jr: The biggest thing is you have to, one, understand what you’re trying to do and who you’re trying to help. And that has to be tantamount to your purpose. If you don’t know who you’re trying to help and serve, then nothing you do will make an impact. Two, you will often still be making a difference and you know who you’re impacting, and often you want bigger names to see you, but they won’t. And you have to accept that. But what you don’t want to be trying to, Hey, everyone here, look at me. I’m here. I’m here. You would like to get attention and that you cannot make people like, you can’t make them respect. You just have to do yourself and be content in the space that you’re in. And I would say thoroughly that you really have to think deeply about who you’re working with, who you’re doing partnerships with, and stay true to your core purpose. Do not let people try to dictate how you should run your org. Don’t let them dictate how they should get a spot on your conference or your webinar or they should get a high profile. I’m like, no, be a resolute in what you’re doing and why you’re doing it, and don’t ever apologize for that.

Melyssa Barrett: When I think about some of the stuff we’ve talked about with you in terms of just advocacy and the power and structural component, I think we talked a little bit about how there’s advocacy work that needs to be done. And in many cases you see that kind of resistance showing up in different places. As a patient, do you see the resistance? That’s when we think about accountability for when we talking about equity, how do we actually get to real change, I guess is what I’m trying to get at?

Dr. Eugene Manley, Jr: You bring up a very good question because we know there are always massive problems and you cannot tackle them all at once. You have to pick one and then sort of, okay, this is the lane we’re in. We can fix this. And then once we get this and have outputs, we can move on. And policy is great because I don’t know if you remember, we had mentioned about my own experience in a hospital system where I had reconstructive surgery on my foot and I happened to be on Medicaid because I launched a nonprofit and it’s hard to launch a nonprofit from scratch. But while I and the surgeon had this great comprehensive post-surgery plan in place before the surgery, unfortunately the staff at Mount Sinai Queens decided that they were going to ice the surgeon out of the medical records that they were going to make decisions.

And so they proceeded to lie. My medical records about my pain, about my ability to ambulate, they tried to get me discharge notices early, fabricated my signature. They asked me about my ability to pay. They misrepresented saying that we would get you home nursing services, home aid services if you go home. But at the same token, they’ve already lied in my medical records, which is why we never got the skilled nursing that I was supposed to get. And then they even relied on my discharge and saying, I had a caregiver, which was the sole reason we were asking for me to get skilled nursing because I live alone. And you cannot have a surgery that makes you non-weight bearing for six weeks and then trying to walk with a walker or a scooter. And every step you take hurt. So you only have one leg you can use, and both of your hands are on a scooter, so you are unable to function like you can’t really cook, you can’t clean, you can’t wash.

It is the most helpless I have ever been in my life. And then the hospital just treated me like I was trash and detritus. And so this made me realize, how do you teach people how to try to battle a system that does not care about you? So I learned you can write letters to hospital leadership, which I did, and they still wrote me back as Mr. Manley as opposed to Dr. Manley. They dismiss everything I said, but you can’t take away the fact that I have the charting and the records of what you did. I called patient relations twice after I got home patient advocacy. They never returned a call until they got a certified letter from me. Then all of a sudden they could return a call. I wrote to hospital leadership. I wrote to the Joint Commission on hospital accreditation. I filed complaints with Medicaid, the, I think director general for Medicaid services.

And I filed with the Office of Professional Discipline in the state because physical therapists have a standard that they’re supposed to adhere to. And that does not mean lying in a patient records about their pain and then not listening to the recommendation from the surgeon is still standing by what you said because you assume that foot surgery is the same as the knee surgery and that is not the case. So I really want to hope after you think of teach you how to write, how to file, how to report, and I just made a poster about medical racism at the big lung cancer meeting I was at. And so really I now developed a framework for patients. And you don’t have to be underserved users, but it’s a framework that you can now use when you go into hospital systems. And it starts as early as even having a medical proxy with you that can read your medical records.

So really, it taught me a lot about making sure you are as protected as you can be, and then having someone there that can advocate in real time. So that stuff that happened to me doesn’t happen to someone else because while I’ve managed to somehow survive, even though I failed the day after I got home, I want to make, yeah, it was not pretty at all. And they wrote the chart, patient can walk and go to the store. And I’m like, really? But if this happened to me de and knows how to advocate, then my concern is how many other poor underserved black Medicare Medicaid patients are you pushing out of the hospital unnecessarily without proper documentation lying in their records, and then they don’t even know that you’ve lied about them and how many have gone home. And it had to be readmitted to either that hospital or other hospitals because of medical malpractice.

And a bigger challenge is then how do we make sure it doesn’t happen? So we have to keep advocating, and unfortunately these things don’t happen unless there’s some massive thing on television. Then they, they’ll come up with their canned statement, and we don’t do this and blah, blah, blah. But I will say this much, and I’ve seen my mom get treated like crap along. I will never set foot in Mount Sinai Queens hospital again, and I’m ARR stubborn and headstrong, but I know what is right and what is wrong, and I will make sure everyone else knows what to do as a result of this. So it made me start doing a little more policy work, which is not my core area of focus.

Melyssa Barrett: A lot of times we think that we are going through so much, but what a powerful testimony that is when you come out and you have resolve and resolution and solutions that you’re giving to folks. I know a lot of times it’s painful to go through some of these experiences, but now there’s so many people that you’re helping by talking about just your process and how you’re thinking. I know so many people go to the hospital, they don’t look at their records, their medical records, and read their medical records. And I mean, you of course have so much of a background, and for you to have gone through this challenge yourself really provides some information that people, I think they think they’re alone in going through certain things. And so I think it’s so helpful that you’re out here talking about what your process is and how you’re thinking about and who do you talk to and where do you write a letter and all of those things. Because I think a lot of people don’t necessarily know what to do because aside from your health that you’re dealing with now, you got to deal with all this other stuff.

Dr. Eugene Manley, Jr: Yes, exactly. And no one ever wants to be taken advantage of when they’re vulnerable. And that’s exactly what happened, and it sickens me that they did that to me. But like I said, I’m luckily resilient, but it was not pretty for a lot of months. I mean, it was, my friend saw me home and couldn’t believe I was at home. I I’m not good at crying and I had tears and it was born. What did I ever do to anybody to deserve this? It was ugly. It was ugly. It was the exact opposite of my personality. I’ve never been so just beaten, but I use it as a result to realize why it’s so important that I try to keep the nonprofit going.

Melyssa Barrett: Yeah. Yeah. What’s one thing you would tell somebody if they are struggling with whether they sit on the patient side or on the institution side? What’s one thing you would give to people when you’re talking about the work you’re doing in shaping our next biomedical engineers?

Dr. Eugene Manley, Jr: I would say if you give it to me from those two lenses, then I would say the biggest piece of advice is listening and empathy. You want to listen to what people are saying, absorb what they’re saying, and then treat them. They are a human, and you would treat your family member unless you don’t like your family member, but hopefully not like to treat, but treat all people the same. Treat them with respect and dignity and don’t go in with preconceived notions. This is where we often get in trouble. We’re going to assume a person is this because they look this way or have this amount of income. And then use that as a guiding goalpost for how you interact with people at all levels in your life and career.

Melyssa Barrett: That’s awesome. Well, this is part one of two, Dr. Manley, at least two, because I think we could go on and on and on in so many different ways, and I really appreciate you. I appreciate all the work you’re doing. So I’m really looking forward to part two where we can kind of dive in. We didn’t even get to talk about AI and some of those things, but I am looking forward to kind of digging in with you a little bit more. And then I want to make sure we also highlight the summit that you have coming up with the SH foundation and really talk through what that looks like so that people can really gear up for the 2026 summit. I think it’s one of those things that if you’re on the East Coast, or even if you’re on the west coast, get yourself a flight and go hang out because it’s so important. So definitely want to direct people to the SHE Foundation website, she.org, SCHE q.org. And Dr. Manley is going to be back to tell us, give us some more information, but check us out and make sure that you’re following Dr. Manley as we go, because he has a lot of information to share, and I’m just really encouraged by the work that you’re doing. So thank you so much for that.

Dr. Eugene Manley, Jr: Thank you so much. It’s always an honor to speak and you’re just doing such great work as well, and I’m just delighted that I’m able to talk to your audience and hopefully they can find something beneficial out of this conversation in the next one.

Melyssa Barrett: I know they will. Thanks for joining me on the Jali Podcast. Please subscribe so you won’t miss an episode. See you next week.