♪♪ ♪♪ ♪♪ >> Dr. McCullough and Dr. Patel with the American Cancer Society, next on "The Chavis Chronicles."

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♪♪ ♪♪ Black women in the United States have a 40% higher breast cancer mortality rate than white women, even though incidence rates are similar.

This disparity has not improved in over 10 years, despite advances in early detection and treatments that improve survival rates overall.

Some factors that may contribute to this disparity include triple-negative breast cancer.

Black women are twice as likely as white women to be diagnosed with this aggressive, rare form of cancer.

Other health issues include -- Black women may have a higher prevalence of obesity and diabetes that may contribute to higher death rates.

Younger women, women with less body fat, and women taking hormone therapy for menopause are more likely to have dense breast tissue, which can make it harder to detect breast cancer.

One approach to addressing this inequity is to improve risk-prediction tools.

The American Cancer Society is working on a study centered on Black women's voices to uncover the unique challenges contributing to cancer disparities.

>> So, Dr. Patel, I'm going to start with you.

Tell us about this new study.

>> First, thank you so much for having us.

We are really excited to share that we have launched a study called the VOICES of Black Women.

This will be the largest ever study at the population level to understand why Black women disproportionately die from cancer compared to other racial ethnic groups and get more aggressive types of disease, oftentimes.

So we are aiming to enroll 100,000 Black women to really join us and go along a decades-long journey to uncover what those drivers of outcomes are for Black women.

It's women ages 25 to 55 who have never been diagnosed with cancer, and you can participate simply -- and learn more simply by going to voices.cancer.org.

It can all be done from the comforts of your own home.

>> So, Dr. McCullough, tell us, from your perspective, do you think you're going to get good responses from African-American women across the United States?

>> Yeah, we're very confident that we'll be able to engage with this demographic.

Obviously, there's been some hesitation to participate in medical research among Black individuals because of the medical atrocities of the past, but I think there's widespread recognition that Black women need to be included in research like this so that as we learn more and as medical advancements are made, we really are ensuring that they're captured and that they benefit from these medical advancements.

And Black women realize that and have acknowledged that.

We've had very good early successes.

100,000 is a big number to get to, but we're confident that we can get there.

>> And how is the responsiveness?

>> We've been really excited to see that we're already well over 1,000 women who have signed up and taken on to join us in this effort and hope to continue seeing that grow until we get to 100,000 or more women.

>> So, Dr. Patel, I just want to ask you, you've been with the American Cancer Society for, I think, 26 years.

Why do you think this study was initiated now?

>> There's a few reasons.

So, we've been doing these types of studies across populations, not focused on any particular racial ethnic group, but really inclusive of all racial ethnic groups.

Since the 1950s, we've engaged over 2.5 million people in these studies, but over the last, in particular, couple of decades, we've continued to see disparities exist for Black women as it relates to cancer.

And, of course, over the last few years, with the COVID pandemic, there's been a heightened visibility around the inequities as it relates to health and many other aspects of life for the Black community.

And so it was really time, long overdue, that we launch a study of this magnitude, but felt that this was the right time to do that, given the fact that there is this heightened attention towards these inequities, that we can partner with Black women to actually solve what is driving these inequities and improve health for future generations of Black women.

>> Dr. McCullough, as you know, African-American women face a lot of disparities.

In addition to the disparity of cancer, there's maternal health questions where the fatality rate of Black women is off the chart.

Over this period of time to get the 100,000 women to participate, will you be issuing some periodic reports, some early data, to also encourage more and more women as the momentum builds of the importance of this study?

>> Absolutely.

We're very much aware that the health disparities that exist and persist in this population aren't just restricted to cancer.

And the nice thing about these long-term population studies is that we can get information on all kinds of health outcomes.

So we do ask them about whether or not they've been diagnosed with cardiovascular disease and diabetes and sickle cell and other conditions.

And these studies will be able to inform those types of outcomes, even though our focus is on cancer.

Cancer is a disease of typically aging individuals.

And so very early on, we probably will focus more on those risk factors that we know are related to cancer, many of which include these comorbidities that we know disproportionately affect Black women.

So we hope that over the course of time, we'll be able to inform some of those other outcomes as we begin to learn about cancer.

>> But there have also been some studies that show that the medical profession sometimes doesn't have the greatest sensitivity when it comes to African-American women, you know.

Being able to endure pain -- you know, this myth that Black women can endure more pain than other ethnic groups.

How do you deal with some of these corollary disparities?

>> So, you bring up a great point, and that was really why it was important for us to focus this study on Black women, because part of what we'll ask about through the study is not just about lifestyle and comorbidities and family history and those types of things that women experience.

But we're also asking a lot about their interactions with the healthcare system.

We're asking about discrimination and bias.

And then in the social setting, we're asking about things like social support and caregiving.

We really want to understand and contextualize the entirety of the lived experiences of Black women through this study so that we can look at how that type of potential provider bias may influence poor outcomes, how biology, how lifestyle and environment, how all of these different factors actually work together to lead to poorer outcomes for Black women as it relates to health.

So, past studies have asked about things like lifestyle and environment but haven't really dug as deep into things like discrimination and bias.

So these are things that we intentionally wanted to make sure that we were capturing in a really high-quality way through this study.

>> Dr. McCullough, you know, when data is collected from studies like this, it's just not crunching numbers.

Somebody has to make an analysis of the data.

Um, tell us about your plans to do real-time analysis of the data as it comes in.

>> Right, so in large-scale studies like this, especially when we're actively recruiting, um, one of the first things we track are, who is joining us, um, what states are they coming from, what are their sociodemographic characteristics to ensure that our study is going to be representative of the population.

And then we augment our efforts for recruitment based off of specific groups that we feel are underrepresented.

So that is something that is always ongoing.

We're tracking those numbers week to week.

But in terms of the scientific analyses, um, we'll begin that as soon as we have a critical mass of women where we feel like we can produce results that we can stand behind and feel confident in.

Um, many of those early results are going to be just sort of demographic -- What's happening in this group?

Are they being screened regularly?

Are they going to the doctor?

What do they say the barriers are?

And even some of those early findings can really help us inform the medical community about better ways to take care of this population.

>> Dr. Patel, if someone wants to be involved in the study, is there a website?

How do they connect with you?

>> So, we want everyone to know about the study.

Whether someone is eligible to participate or not, we hope that the study name, VOICES of Black Women, is commonplace in people who are interested in understanding about health research.

But, yes, we are promoting, of course, through having conversations like the one we're having with you right now, but also through social media, through print and radio, as well as television media.

And then the American Cancer Society has a footprint across the country, and we have many partnerships at the national, regional, or local level.

And we're leaning into those partnerships.

Those partnerships are oftentimes faith-based partners, so working with large churches, working with civic and community organizations, working with corporate partners and health-system partners so that we are getting the word out as broadly as possible, and then leaning into our volunteer and donor bases, as well, to help us spread the word into their own communities and to the people that they know who may be eligible and interested.

What we've seen from our past studies is that people join these types of studies because they want to be part of a collective effort of improving the health of future generations.

And so for us, this really is a partnership and a community of 100,000 Black women who are coming along with us as researchers to learn what we need to know to improve that health.

>> Dr. McCullough, 30 years is a long time to have a study.

How did you all determine that it would take this period of time?

And what is your expectation that after 30 years, what would these results provide for the American Cancer Society and for the public at large?

>> Right, so 30 years is a commitment.

We are committed to this research, and we hope that every participant that chooses to work alongside us is also committed.

30 years was determined based off of a few different things, and so the first being that we know that there are many early life experiences that impact cancer later in life.

Many previous studies would recruit people a little bit in older age and have a shorter follow-up for cancer.

But what they often miss are the Black women that are diagnosed in their late 20s and in their 30s.

And so by having this wide time period, we're able to recruit younger women and speak to those early cancers but then are also able to follow those women over their life to determine why they get cancer in their 50s and in their 60s.

And so that time frame we thought was going to be relevant and applicable for both informing early cancer among Black women but also the cancers that tend to emerge later in life.

Um, I would say it is a commitment, but what we are asking of women is to engage with us for one hour per year over the 30 years.

So we have two 30-minute touch points every year.

And so a one-hour time commitment per year can really, um, yield substantial advancements in us understanding Black women's health.

My hope is that we have done more to understand how to prevent cancers among Black women and specifically prevent those aggressive cancers that are harder to treat and often don't have good outcomes, that we have prevention strategies that are going to be culturally appropriate and relevant, that people feel like are applicable to them and that are manageable.

And then ultimately, we want women to be able to survive their cancer if they are diagnosed.

So understanding what about their engagement with the medical-care system when they're diagnosed prevents them from being adherent or prevents a treatment from being efficacious.

All of those things are going to be important for improving survival.

>> So, Dr. Patel, are you aware that, outside of the United States, are there similar studies, or is this an unprecedented step on behalf of the American Cancer Society?

And do you think other cancer societies will also benefit from this study?

>> So the findings from this study are going to have benefit, really, in so many different populations because we'll understand more about the biology of disease in Black women, but we'll also understand about the social and environmental and lifestyle factors, as well, and how those are applicable.

If we look at our past studies, as I previously mentioned, we've been conducting these types of large-scale population studies since the 1950s.

And just to give you one idea of the, really, worldwide impact that these studies can have, it was actually our first population study back in the 1950s that provided some of the earliest evidence linking smoking to lung cancer.

And so if we think about what the landscape of tobacco control looks like, not only here in the United States, but, really, worldwide now, how we're, really, leaders in teaching other countries how to reduce the burden of tobacco-related disease, that started through the evidence that was built in our earliest population studies.

And that's just one of the many, many examples I could go over.

So we wanted to intentionally focus on a population of Black women because these past studies, both at the American Cancer Society and worldwide, have largely been based on white individuals of European descent.

And so, as Dr. McCullough mentioned, being able to have culturally relevant interventions and understanding of disease in different populations is essential for us to be able to bring cancer under control for everyone.

>> Dr. McCullough, for the benefit of our viewing audience, what is the difference between a study and a clinical trial?

'Cause sometimes people who are not in the medical profession, they kind of mix the two up.

This is a study, but tell us the difference between a study, like you're doing now, and a clinical trial.

>> Absolutely.

So people typically think about research and think about clinical trials where a person is receiving something.

So they're receiving an intervention, they're receiving a drug, and they're testing whether or not that intervention or drug works.

In a study like this, which is observational in nature, what we do is we follow a cohort of individuals, so just a group of people that are moving across time together, and we're asking them about their day-to-day experiences, their lifestyles, their behaviors, largely questionnaire- and survey-based.

We're not giving you anything.

We're not giving you an intervention.

We're not giving you a drug.

We're not testing a hypothesis in that manner.

We are collecting data so that we can better understand what causes cancer and what can improve cancer survival.

>> Dr. Patel, your colleagues in the medical profession, what are they saying about even courage and will to do something like this for 30 years?

>> We have been to a number of scientific conferences already this year talking about VOICES of Black Women, and it's been received with so much enthusiasm, so many congratulatory notes and comments that, you know, the study is so long overdue and that they commend us for taking this initiative on.

I think one of the other things that we're really excited about is that, even here at the American Cancer Society, our -- the study to -- the core of the study team that's been leading the design and execution of the study has been made up entirely of women and largely Black and Brown women.

And our scientific advisory board is made up exclusively of Black female scientists who are experts in Black women's health as it relates to cancer and other health outcomes.

So there's been so much support from the scientific community in terms of even engaging and advising us to ensure that we do this as best as we can.

>> I want to ask both of you, Dr. Patel and Dr. McCullough, where did you do your medical studies?

Dr. McCullough?

>> Um, I was born and raised here in Atlanta, and I went to Vanderbilt University for my undergraduate education.

I went to Meharry Medical College in Nashville, Tennessee, one of the few, um, medical HBCUs, for my master's of science in public health, um, the University of North Carolina at Chapel Hill for my doctorate degree in epidemiology, the Lineberger Cancer Center, also in Chapel Hill, for a postdoctoral fellowship, um, and then Emory University, where I have a faculty appointment, um, has been my academic trajectory.

>> Wow, that's quite an academic journey.

Congratulations.

Dr. Patel, what about you?

>> So I was born in New York, and then, as a toddler, moved to Florida, so, uh, home is Daytona Beach, Florida, um, and then went to the University of Florida for my undergraduate studies and then came to Atlanta back in the 1990s to get my master's in public health at Emory University, um, and then I went to the University of Southern California, to the Keck School of Medicine, and worked at the Norris Cancer Center, where I did my training, and I got my doctorate in preventive medicine with a concentration in epidemiology, and then came back to the American Cancer Society as a postdoctoral fellow and never left because it's just been an amazing journey to build and contribute to these population studies.

>> Let me ask both of you.

There is not a debate, but some discussion about the social determinatives of health in America.

We talked about the disparities, but could both of you comment that this study hopefully will enhance a better understanding of the social determinatives of cancer and other medical situations?

Dr. McCullough first.

>> Yeah, so social determinants of health, really -- we've been learning much more about how that impacts health and health outcomes.

You know, really, um, accumulating evidence since the 1990s that where you live, work, play, um, impacts how you access healthcare, um, and certainly impacts your healthcare outcomes.

That has been front and center as we've been designing this study, thinking about how people engage and interact when they're within their neighborhoods and communities, their neighborhood environments, in terms of food availability and accessibility, ability to engage in physical activity.

All of those things are what we collectively think of as social determinants of health.

But this study goes one step further.

We go even further upstream of social determinants of health to think about the structural determinants of health.

What are the policies and practices in this country that have sorted people into neighborhoods that may lack access to healthy foods and opportunities to engage in healthy behaviors?

And so we've really wanted to emphasize both of those in this study.

That way, we can better inform policies at a local, regional, and national level.

>> Thank you.

Dr. Patel?

>> So we know that cancer can affect anyone, but we know that it doesn't affect everyone equally.

And, as Dr. McCullough shared, the barriers that may affect one population compared to another, they're deeply rooted in inequities at all levels of society.

And so it was really important for us to be able to capture data and understand all of those multilevel drivers, um, that -- that contribute from that structural level to that societal, to that community, to that individual level.

And so that's -- that's really what we'll be focusing on is those multilevel drivers that -- that can affect how someone or whether someone lives.

>> Well, thank you.

On behalf of millions of Black women who will benefit from this study, we thank you, Dr. Patel, we thank you, Dr. McCullough, for joining us on "The Chavis Chronicles."

>> Thank you so much.

>> Thank you so much for having us.

>> For more information about "The Chavis Chronicles" and our guests, please visit our website at TheChavisChronicles.com.

Also, follow us on Facebook, X, LinkedIn, YouTube, Instagram, and TikTok.

Major funding for "The Chavis Chronicles" is provided by the following.

At Wells Fargo, diverse representation and perspectives, equity, and inclusion is critical to meeting the needs of our colleagues, customers, and communities.

We are focused on our commitment to diversity, equity, and inclusion, both inside our company and in the communities where we live and work.

Together, we want to make a tangible difference in people's lives and in our communities.

Wells Fargo -- the bank of doing.

American Petroleum Institute.

Through API's Energy Excellence Program, our members are committed to accelerating safety, environmental, and sustainability progress throughout the natural-gas and oil industry around the world.

Learn more at api.org/apienergyexcellence.

Reynolds American, dedicated to building a better tomorrow for our employees and communities.

Reynolds stands against racism and discrimination in all forms and is committed to building a more diverse and inclusive workplace.

At AARP, we are committed to ensuring your money, health, and happiness live as long as you do.

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