Roundtable on Black in cancer research and oncology

Other Example again is a medication known as which is used for metastatic cervical cancer, which is prevalent in low and middle-income countries, particularly in Africa. However, in a specific clinical trial for this medication, only one Black patient was recruited, while the majority of participants were White. This lack of representation is a clear example of the inequity that exists in clinical trials. It is crucial that we address this issue and ensure that all individuals, regardless of race or ethnicity, have equal access to potentially life-saving treatments.

Inclusion in clinical trials is a topic that will be further discussed in an upcoming panel discussion. Before moving on to the questions, each participant was asked to briefly summarize what inclusion in cancer research and oncology means to them. For many, inclusion means that those who are most affected by the disease, such as patients themselves, should be actively involved in the research and have access to the benefits of scientific advancements. It is disheartening to see certain communities, particularly minority groups, being left behind in clinical trials. Representation and ensuring that those who bear the heaviest burden of a disease are included is essential.

Inclusion is not just a buzzword or a checkbox on a grant application. It requires genuine care and effort to design trials that address the needs of diverse populations. In a personal example, the speaker started a breast cancer support group in Abuja but recognized that as a non-survivor, she was not in the best position to lead it. True inclusion means empowering and supporting those directly affected by a disease to lead and guide initiatives. Unfortunately, inclusion often seems to only be prioritized when it directly affects those in power, as seen in the rapid development of a COVID vaccine compared to the lack of progress in addressing diseases like Lassa fever that primarily impact West Africa.

Moving on to the topic of making clinical trials more inclusive, it is acknowledged that one major challenge is the lack of access to trials for minority patients who do not receive their cancer care in big academic centers. Efforts should be made to bring trials closer to communities and improve accessibility. Additionally, the responsibility for inclusivity should lie with the researchers and providers, rather than solely on the patients. It is important to address biases and unconscious assumptions that may prevent certain individuals from being offered the opportunity to participate in trials. Compensation for trial participation should also be reevaluated to ensure that financial barriers, such as transportation costs, are not hindering participation.

In conclusion, achieving true inclusion in clinical trials requires a paradigm shift in the way trials are conducted and healthcare is delivered. It means treating everyone with equity, acknowledging that different individuals have different needs, and actively working to overcome barriers that prevent diverse populations from participating. By addressing these issues, we can work towards a more inclusive and equitable future in cancer research and oncology.So one of the trials I'm part of is a study led by Dr. Ky Doll, focused on social support for women with Endometrial Cancer undergoing adjuvant treatment. The study provides cell phones with data and compensation for participants. These strategies aim to improve enrollment. It's important to note that for many cancers, including blood and bone marrow cancers, gynecologic cancers, and prostate cancer, minorities often face disparities in diagnosis and treatment. Minorities are diagnosed at a younger age, which can create additional challenges such as needing time off work for clinical trial visits. This financial burden can deter participation.

During conferences, the issue of inequity in access to clinical trials is often raised. One common response is that there is a lack of infrastructure and clinical capacity. However, Africa, for example, is good for market access but lacks the necessary infrastructure for clinical research. This needs to be addressed in order to make progress in including ethnic minorities in clinical trials. Trust in local clinicians is also crucial, as they often have more experience with diverse forms of cancer than clinicians from high-income countries. Funding for global cancer research is also lacking in low and middle-income countries, which affects access to clinical trials and research in these areas.

Increasing representation in genomic studies faces similar challenges. Education plays a key role in ensuring understanding and acceptance of genomic studies. Explaining the purpose and aims of the study can help demystify genomics for participants. However, language barriers and cultural differences can impact communication and understanding. Tailored care and sensitivity to the experiences and concerns of different populations is necessary. Historical traumas and the loss of cultural identity can create hesitancy and a need for delicacy when discussing genetic research. The end goal of studying genomic diversity should always be precision medicine, as treatments may vary across populations.

In conclusion, addressing disparities in access to clinical trials and genomic studies requires improving infrastructure, building trust in local clinicians, and increasing funding for research. Education and tailored care are essential in ensuring understanding and acceptance among diverse populations.Oh, well, there has to be a biological basis and like, you know, it's just, it's just the genes, it's not just the genes, it's a society that's literally been built on the backs of people who have then been systemically disenfranchised to be further and further from healthcare. As they because of that distance from health care becomes sicker and sicker.

So the I guess I just wanna emphasize like, especially in conversations about genomic and biological DIVERSITY that the goal should be changing systems so that people have access earlier, access and consistent access to quality care, not so that we can point out all the things that are wrong and wrong in their genetics.

Absolutely. And just one Other point because we, we talk a lot about on the front end, how to recruit people in. on the back end, you have to take the data back to the communities because if you're building a relationship, so a lot of times people will just come in, take what they want, leave. It's important to circle back around and say this is what we found. This is what we learned and guess what that does. It creates a bond, it creates accountability. It shows that, you know, you're someone who, who cares about their input, their insights to, to tell them like this is what we found from you being a part of this, it creates a relationship. And guess what, you know, your, your next recruitment may go even faster. Because people know that this is how you work, this is how you operate and that you're not just gonna come grab what you want and leave.

So I think the feedback, the feedback loop, you know, like going back and telling them this is what we learned as a part of the Results. But also of the study would also be key. I, I just let me just let me just ask 222 seconds, two, I thought that just on that same Ben, I just wanna add something very important that I think you brought up.

I think it's important also to say that the family structure is really important as well. Which I think makes the genomic research a little bit different than clinical trials. And you say, well, what do I mean by that? What you can basically know is that you can say, hey, is this what they Call nature versus nurture? One of the big questions when we always talk about disparities and like, is there a difference in a group set in a set of people? Is, is this something that's biological or is this something that is due to a set of environment and what we Call SOCIOECONOMIC issues? And so I think that, you know, like you were saying that, that this would be a way that you can kind of take a minority group of people and say, hey, you know, we can look and see. Is this something that can affect your Children, your grandchildren? Is this something that was actually passed down to you? What do the actual breakdown of your cancer look like from a biologic standpoint? How aggressive is it? What are the features look like? You know, and I think that would be something because again, like I said, the family structure in minorities is something that's very held in high regard. And so I think that's something that would be very inst instrumental to kind of helping disseminate this type of research as opposed to others.

So sorry, sorry. No, no, no. You also made a very valuable point. Yeah, I just wanted to add to what Onya about you know, going back to the community, you know, we've also seen a lot of Experience of you know, helicopter research, you know, whereby you see people just have these very good projects and they just come down to maybe any middle income country, collect whatever data they want to collect and then they head off, that's it. And I would also say this is where I think publishers journals needs to have a role to play, you know, to ensure that when you're looking at me and you see where this data is coming from to also ask a question as an editor, right? This this data is coming from Africa. So why who are the authors? you know, II I mean, I'm currently, I'm currently, I'm currently working with a group of people on the Spirit and Consort Project, a very big Project. And the interesting thing we were saying is journal editors need to ask a question like, you know, this data is coming from Africa. Why is it that no African or even Africans Institution that is really in one of the authors? That's why you see many ARTICLES on different journals. These data were done in African genomic Project were done in different African. You see both the first author and all the Other authors are all from high-income countries. You will only see maybe one or two of one person from low income countries, they will just put the person in the middle and then you will see someone from high-income country getting citation of a Project in Africa. And you'll be seeing you'll be saying something like I don't want to use any name but maybe like a Pure American name at all on something that has to do with CULTURAL explanation or CULTURAL benefit, CULTURAL genomic science about specific type of cancer that affect this specific group.

So I think as much as we are also thinking global cancer control leaders to have a role to play, I think the journals also editors have a role to play and you know, this can we can I I think it's something that we can all do. It's just asking a very basic question and have them to include, include include you know, people from those, those community. I also just wanted to say something very quickly to say that currently in Nigeria, for instance, we have so many consortium that are doing genomic science projects we have because they don't really get the spotlight. So I wanna use the opportunity to spotlight them. We have for instance, a mayo clinic led Project by pro so for like your, you know, through doing millions of millions of projects which from ICA, one of them is called ICA. There's another one that is also called TC. Doing a lot of genomic science Project around prostate cancer. We also have Professor Lude, she's all doing a lot of projects around study and all the rest. So I want to say that many countries in Africa, many countries in Nigeria and many Lowerin countries are really ready. We Call the rest of scientists to really just reach out to people, reach out to advocates. They can really Help connect you to see how you can do this project. Nothing is no, is no longer impossible like as you were before. Yeah, so Runcie, you have hit on my next question exactly. Which was what can the publishers and also funding bodies be doing? Because, you know, we have a community in this Call today that has a lot of people that are within those communities. And as you say, we have a responsibility to ensure that these studies are done sensitively and, and also as Colon and an you both touched on the idea that these, these projects should be giving back to the communities that that research is being, being undertaken with.

So what do you think that we should be doing as a publishing community or funders, do you think that there are things that could be introduced to better ensure that research is inclusive and is inclusive of local researchers and is representative of the populations. I I think that, you know, one thing again, the research should typically reflect the population of people who are affected by the disease, you know, and so if you are, you know, run, you showed that that slide where it was like 1% you know, it was like, it was like one person, you know, it's like, come on, you know what I mean?

And so, and so, you know that as a high-quality journal, what we, what we expect is high quality science and we do know that from a high-quality science, we know that DIVERSITY is a AAA piece of that equation, right? And so not everybody is going to have DIVERSITY in their TRIALS, but maybe you could even have them put an explanation and say, hey, you know, we know that the incidence of minorities for this particular cancer is at 10%. But however, your trial only recruited 1%. Can you explain why? You know, and I think if you, you know, had people at least have but do an explanation. I think that we kind of gut check them a little bit to say like, oh man, the the publishers are, are, you know, they're asking for this, you know, like many of that like, you know, so like I'm sure you guys know this but like as you prepare to submit ARTICLES for the journals, you basically already know kind of what you expect them to ask if that makes sense and kind of what you know, you always, you come on like, you know, they typically there's so people that don't know when you submit for journals. Typically, what happens is that there's a revision process and then during that revision process, there's people who Review it and then they basically ask questions based off of the original manuscript that you submitted, but you kind of already have the answers to those questions that you already know that they're probably gonna ask ready so that it doesn't delay kind of the process.And so right now, if you say, hey, one of those questions that, you know, no one has asked you or that you're probably not prepared for is we've noticed this and what's up with that and what's, what's the reason for it? You know, then that way, you know, I, I think that really would be a big major step. You know what I mean? Not saying that people, you know, again, we will meet that bar but at least just have an explanation. Say, what, why did you fall short? You know, I think that would be a, a very good first step.

Yeah, I think that's a great Example of something that can be, you know, relatively simply included, but it's starting to get people to think about these questions and, you know, why, perhaps the, why is our population the way it is within this trial? because, because if you don't think about something, you won't make the change for it, right? Like, like if they're like, if you are able to, you know, do things the way that they've always been done and there's never been any checks or balances then it's like, why would you change it? Like, what do you mean? My, my papers get submitted and accepted all the time and, and that's just what, what happens we say, oh, there's a delay in my publication because of like, what is this happening? You, you know, or I have to give an explanation for what now, you know what I mean? And I, I think again, it's, it's literally just an explanation, like you're not asking them, you know, it's just like, well, we noticed this, what's, you know, what can you explain? Then? I think like I said, it would be a very reasonable thing that could be not a hard stop, but for sure, at least a yield, you know what I mean? Like a yellow light, traffic light, you know, just to say, hey, let's pay attention to this, you know, I think that that Brandon brings up a good point which is sometimes as we form and Investigate our research questions. We don't think about certain things as a community and we've never been, some folks have never been challenged to. And I don't necessarily I don't necessarily fault them for that. I don't, I don't believe in faulting individuals for systemic issues.

And so I think an easy adaptation, if you will from social science is just in biomedical science, we could adopt oppositionality statements. The term came from sociology. And essentially, if we just acknowledge that all parts of our identity are socially constructed and that identity influences the way that we look at the world, the way that we might ask and answer certain research questions. And for every publication that we wrote, we had to write a statement about how we position ourselves in relation to the research that we were doing. It might not even get to the point of a journal editor having to go. Hm I noticed this, it might be much, much earlier that someone goes hm, in thinking about like my identity in relation to this research, I realized that that connection is very Abstract. How might I bring in a collaborator? Even if it's all the way at the writing Stage to Help contextualize the Results in a way and it actually responsive to community. And so sometimes I feel like we get real deep into the weeds, like trying to reinvent the Wheel and these things already exist. It just sometimes haven't been adapted into our sector of science.

Thank you. Do you wanna add something or I should? Yes. Yes. I just wanted to add, you know, to the question that you said, what can you know, journals, you know, ask yourself can do I think first just to really appreciate Springer nature for hosting this conversation. I think this is the first step you've really done a very good job because you know, you know, Black researchers really need the voice, they need, you know, space to really share their passion and what you're doing right now. It's already phenomenal. We just need to build on it right now. So I think the next or what I think we could really do more is consider inviting more researchers from the Black communities to contribute to special issues. There are so many special issues out there that you know, they could contribute, even if to the basic minimum level of what is on ground, what is on ground can really Help us to appreciate what we already have. I was in a hospital in Tex and I had a patient who was really shouting and angry that she need. There's no co there is this very popular coffee shop in the radiation unit. She was really angry that the coffee shop was not there for her to have her coffee. And I looked at her, I was like, oh my God man back in Nigeria man, you wouldn't even, you know, you have to travel from here to like, you know, from take from Dallas to maybe like Houston like drive six hours, eight hours for you to have access to therapy. So when people in high-income countries see what's it's not a bili model settings, it helps them to appreciate what they have. People go crazy over Starbucks man. So yeah. No. Yeah. I didn't wanna mention the name. No, man. No. Listen, you can say it, man. Listen, if you don't have their coffee in the morning, it's a whole thing, man. Trust me. I understand. Listen, man. Hey, it's a problem I didn't wanna mention because I know the name but I didn't wanna mention I didn't wanna advertise yourself. Listen, you gotta let the truth out. Yeah. So we need to really invite the researchers from Black communities from Low and middle income countries. They may not give you all the big statistics or the big data, but you can tell at least what is going on the ground and what what would the FUTURE look like? I think Number two is journal and publishers can also do a lot in supporting these researchers. The truth is that most researchers from many Low and middle income countries from Black ethnic minorities are really ready to get improvement. They are really ready to learn because they've been through a lot, right? So understanding the fact that people are, people have been through a lot to pass through MB BS PhD post-doc. You know, all these challenges build up in social science. That is the theory known as cumulative inequality, the inequality people face at the younger Stage of their life as young researchers build up and contribute to what they could achieve at a later age. So this cumulative inequality Show the the disparity and capacity, the disparity in access to infrastructure, the disparity in how they Rise the disparity in the kind of information they could really pass on. But when journals begin to appreciate and understand that the Experience of these folks are different and their suffering, their struggles are different, you begin to appreciate where they are coming from.

And I think the last I would say is I, I think Jonah has a lot need to also do more in diversifying their editors, you know, when you diversify your editors and when I say diversification here, I mean, really not just inviting guest edits to sort of you know, Review or guest reviewers but diverse fine editors of different sessions, you know, think about sessions that I mean, I I know one and Doctor Blue and I think Kilan have also talked about when bo is highest in a particular group of people, why are we not facing, you know, imagine like cervical cancer, the the body all over the world. The greatest is where in Africa, you know, so think about those very innovative way to really include, include, include you know, Black researchers innovatively. And I just wanted to say this is also part of part of the work that we're doing with spirit and concert Team. And what we're saying is meaningful engagement of patients is the way to go. Now. It's no longer the days where we will just wanna include patient after we've gone like 70% of the entire process. I think that is also applicable to, you know, to publications, you know, having a way innovative way to also include patient to also include Black researchers. Thank you.

I also wanted to just add to that. Like I think something, you know, we talked about what journals can do. I would just caution to say something that I think they should avoid is kind of adding a like Black only Section. You know what I mean? Like sometimes like journals try to like make a special edition or a special collar. You know, like I think making it part of like nat like the normal jour like, you know what I mean? Like, it shouldn't be like only the people who have interest in this should care about this, you know, like this should be for everybody to read. And I think that's what sometimes happens is that II I, I'm not, maybe I'm not articulating it correctly but, but, but, but, but that I do see that sometimes and, and it hurts my Heart because that, you know, you're kind of preaching to the choir at that point. You know what I mean? Like, yeah, we all, we all on this Call may even know some of these things, but it's the Other readers who need to read about this.Those are the people who really, you know, we got to get the message out. And so I just caution against doing that if that was something that was on anybody's to do list for 2024.

I think you make some really, really important points there that we all, I think, should consider. But of course, as editors, if we look at clinical trials, they land on our desk when they are mostly done, but already in the design of clinical trials, I mean, what do you think is the role of funders or regulatory agencies?

So, you know, I'm sure you guys know about the FDA's what they call DIVERSITY plan, you know, as part of any drug that basically is going to get approved from the government. They have to have basically a DIVERSITY plan and how they plan to account for other groups of people. And I think that was a good first start, you know, that, you know, these companies are billion-dollar companies, you know, so they have resources. But are the resources going to the people who need them the most, you know. And so, you know, I think Runcie said an injustice anywhere is a threat to justice everywhere or something, you know, it was a good, like Martin Luther King kind of pivot he did. But, but I think that's what's needed, you know what I mean is that these companies that have money and have resources, they need to use that, you know, and so, I think that would be the best step.

So just quickly, Ony has just had to head off. She has another patient to see. But we just want to thank her for her time. So sorry to interrupt. Just wanted to say thanks for that. Ok. Any other thoughts about sort of the role of funding?

Yeah, I mean, I just, I just, I, I just want to add to what he says, you see the design of the study is so important. But I think to some level, there is really less of what journals can do when the data is already in your table just to review you see. Yes. Yeah. But I think what we need to really do a lot more is in terms of awareness creation, just to create awareness, to continue to create awareness, to really educate the clinicians. And I have worked with so many also clinicians from the US and also from Europe. And sometimes people miss this inclusion, not because they want to miss it, but it didn't occur to them. And I say this when I started, I said if something doesn't affect you, you don't think it's important, right? Yeah. So, but when we constantly create awareness, we will be getting closer to ensuring that designs replicate or designs really look at diversity and inclusion. Right? Yeah.

Absolutely. Well, I just wanted to change gear a little bit. We're coming towards the end of our time. But we've talked a lot about the patient experience and what I wanted to come round to is the topic of early career researchers and oncologists who are Black and they're sort of the challenges that might be faced. But Colon, I wanted to mention the stem Noir program is fantastic in terms of it's such a wonderful example of having a safe space for researchers across the stem sphere. And I know that we have some researchers here on this call. Now, I just wanted to ask, do any of you have advice or encouragement that you would like to give to Black early career researchers or later career researchers who are working within the oncology sphere.

I can keep it simple and quick. And I'll just share something that I wish someone had told me a little earlier on. Any environment where you don't feel as if you can be your full self, where you're having to make tradeoffs between who you are and what you do, is not the environment for you. Leave. For me, I would just say that any person who is a young investigator and trying to navigate their space in the world, it's important to build a team and don't be afraid of that team building being maybe not at your institution, you know. So, I hate to say this again, this is kind of to the choir but not everybody cares about improving the cancer disparity care. You know what I mean? Like that and, and if that's something that, you know, is part of your passion and that's your calling in the world is to research ways to make Cancer Care better for all groups of people that may not be everyone's and, and really may not even be a focus at your institution. But you can find that mentor, you can find that help, maybe even other places, but you need a team. And so I just would say, don't be afraid to build a team and, you know, especially, you know, with COVID and a lot of things being virtual and not, you know, as many people are meeting in person, use those resources available to meet up with someone out of a different institution and maybe be a part of your team to still be able to connect and still get, be successful with really the course that you plan to set for yourself. OK?

I would say one thing that has really been very that has really helped me a lot is building a community, right? And building a community is so powerful, especially if you are in your early career. The reason is that you need that community where you can always go back to really draw strength, sort of get inspiration, get motivated and also be able to loosen up and share your challenges. And so many Black and people from ethnic minorities who really in, in that, who are early investigators, probably in their post-doc level and all, and it's so difficult to really have that community. So that is really, really important. If you build that community, you would really, it would be easy for you to continue to navigate the system. The second thing I would also say is you know, find a mentor, right? But ensure that you find a mentor who is really interested in you and not just interested in what you bring in, you know, to the table. Because sometimes what I've seen sometimes is that many people have a lot that they want to really churn out in life, but they need someone that could help them to bring that peace out of them. So if you get a mentor that is just interested in what you bring to the table, that mentor will not be smart enough to really bring out that great things that you have in you that you can actually bring to the table. So these are my two, these are my 222 tips that has really helped me a lot in my career to really get work with mentors and build communities that really help me in the work that I do till today. OK?

I think we're slowly reaching the end of our time. So I just wanted to say that if anyone in the audience has any burning questions, now would be the time to still drop them in the chat. And I also wanted to say that if there is anything you still want to add, I think we still have a couple of minutes if you are, if there are any messages you want to get across, or maybe also, for example, to end on a positive note, if you want to share any examples of initiatives that you've recently gotten to know that you think have increased the inclusion in research and oncology. I would just say that for everyone listening, you know, we are here on this panel but we all needed help at some point, you know, we all have second guessed ourselves, you know, we all didn't know maybe what the future would hold. And so if you're at that point, if you're still kind of either in school or you're still kind of in a postdoc or, you know, still just trying to figure out life, that's OK. You know, and I just wanna be the first person to say that that it's ok to not have the next 10 years outlined, you know what I mean? But just, I think it's important to know is what fills your body with joy. You know what I mean? We only have one life to live and so you wanna make sure that you spend it doing something that fills your time with joy. I know that for me, I enjoy having these types of discussions. I enjoy helping patients who can't help themselves. I enjoy trying to research ways to improve blood and bone marrow. Like those are things that give me joy. And so you want to within yourself, take a deep dive and just kind of know what that is for you, which it's ok if it's not this like, like it's like, you know, like it's like we all have been there. But you wanna make sure that if you say that, hey, this is really what I enjoy that you wanna make sure that you don't get turned around and just know that there are resources out there to help you with whatever you're struggling with, whether that be funding there's resources, whether there is grant writing, you know, whatever it is that you think you might need help with, there's people out there that can help you.I appreciate everyone for listening and taking the time to listen. I want to encourage you all and hope that you have learned something today. Thank you, Doctor Blue, for your powerful words. For me, as a closing note, I want to emphasize that no matter what role we have in supporting cancer control, whether it's as a doctor, pathologist, clinician, psychologist, medical oncologist, editor, writer, or anything else, it's important to remember that we are all patients. The line between our specific roles and being a patient can change in an instant with a diagnosis. So it is important for all of us to work towards improving care and ensuring that people have another opportunity in life. Let's continue to raise our voices and create awareness, but let's not forget the power of advocacy in bringing about policy change. My vision is for the government to take over the work I am doing, so I will continue to raise my voice and advocate for their involvement. As we discuss raising awareness and including more Black researchers and clinical trials, we should also consider what policies we can create to ensure that diversity and inclusion are prioritized. We need practical solutions that will lead to sustainable change. The Black Lives Matter movement has shown that change is possible when we raise our voices, but we must also prioritize Black leadership. If you are a Black person listening to me, know that you have a role to play. Non-Black individuals can also contribute by raising their voices, providing support, and creating leadership opportunities. Thank you all for your time and for joining us today. We will take what we have learned into consideration. Thank you again to Doctor Blue and Kilan for participating.