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Listening to Learn: Southeast Center for Research to Reduce Disparities in Oral Health

Media: The Inside Scoop


June 2009

Smiling African American manA generation ago, cancer was a taboo subject that was often mentioned among friends in hushed tones.  Today, that’s no longer the case.  Americans wear pink, applaud races for a cure, and celebrate the truly heroic stories of cancer survivors.  But public awareness has been slow to extend to the head and neck cancers, including oral cancer, particularly among the low-income and underserved Americans that are most at risk.  To learn how to enhance awareness and save lives, the NIDCR began supporting the Southeast Center for Research to Reduce Disparities in Oral Health at the University of Florida’s College of Dentistry in Gainesville.  The Inside Scoop recently spoke with Dr. Henrietta Logan, the center’s principal investigator and a professor at the College of Dentistry, to find out more.

I’ve heard that one of the major recent advances in fighting breast and prostate cancer is simply increased public awareness. That is, today more Americans than ever are aware of their baseline risks for these diseases and get screened regularly.  But for oral cancer, public awareness remains very much a work in progress.  It’s not that people won’t talk about oral cancer or head and neck cancers in general.  It’s more that they don’t know about them.  Is that correct?

Very much so.  When people notice an unusual red or white sore in their mouth that does not go away, they often think, “What in the world is that?”  But most don’t necessarily take the next step and make an appointment with their dentist or physician to find out whether it might be serious.  That’s a big part of what we need to change.  If more people were aware of oral cancer and the potential benefits of early detection and treatment, deaths from oral cancer might drop significantly in the United States. 

And how high are those numbers?

According to the American Cancer Society, an estimated 35,000 cases of oral cancer will be diagnosed this year.  Approximately 7,600 Americans will die.  Those aren’t huge numbers – except that most of the deaths could have been avoided with early detection.  Over a decade, that totals roughly 76,000 Americans.  Gone.  It’s a real tragedy, and a storyline that we can start to rewrite in this country through science and increased public outreach. 

Some might argue, though, that when push comes to shove we’re really talking about changing behaviors.  After all, the best recognized risk factors for oral cancer are tobacco use and alcohol consumption. 

 

That argument is true to some extent, but it gets ahead of itself.  First, prevention and awareness certainly overlap conceptually, but they aren’t the same thing.  Awareness extends beyond prevention and recognizes that millions of Americans unfortunately still engage in these risky habits.  They need information to protect their health, and we have an ethical responsibility to provide it.  It’s the right thing to do.  Secondly, we still have a lot to learn about oral cancer and its causes.  There clearly is a genetic component at work, and it stands to reason that there could be viral and/or microbial cofactors involved.  So, it would be silly to generalize and essentially stigmatize the condition.  It’s just not that simple. 

How do dental disparities fit into the picture in the United States?

Very prominently.  It’s well established that oral cancer adversely affects low-income Americans, particularly African Americans.  This is due primarily to two factors.  The first, as mentioned, is lack of awareness.  Your average American tends not to know much, if anything, about oral cancer.  The second pertains to access to healthcare.  Low-income Americans often don’t have health insurance, and they are reluctant to take on medical bills, unless they’re considered absolutely necessary.  These factors create a common scenario in which low-income Americans with oral cancer tend to get diagnosed when their tumors are fairly advanced.  Because treatment comes late, they are more likely to have a disfiguring and/or fatal outcome. 

So that takes us back to the awareness issue?

That’s right.  We must increase public awareness of oral cancer and encourage people to seek help earlier.  Our NIDCR disparities center allows us to more vigorously tackle the problem here in Florida over the next several years.  But, like that Biblical story about teaching a person to fish, the center will allow us to learn how to fish.  We then can pass on the science behind these discoveries to others around the country and help them communicate more effectively with people at risk for oral cancer as well as many other negative health outcomes.

Where will you and your colleagues begin your efforts at the Southeast Center for Research to Reduce Disparities in Oral Health?

Our initial efforts will be with African Americans.  In Florida, African Americans disproportionately face the unfortunate scenario that I just described of late diagnosis and late treatment.  So, that’s an obvious place to start.  Nationally, African American men survive about 21 months after diagnosis, while white men survive about 40 months. With white men, the numbers have improved slightly in recent years; with black men, the numbers actually have gotten worse. 

Our initial efforts will be with African Americans.  In Florida, African Americans disproportionately face the unfortunate scenario that I just described of late diagnosis and late treatment.  So, that’s an obvious place to start.  Nationally, African American men survive about 21 months after diagnosis, while white men survive about 40 months. With white men, the numbers have improved slightly in recent years; with black men, the numbers actually have gotten worse. 

Any idea why the numbers have gotten worse?

Not to sound like a broken record, but it all starts with a lack of awareness.  I just can’t emphasize it enough.  Part of the problem has been miscommunication.  I think the healthcare community in general hasn’t always spoken effectively to its target audiences, be they African Americans, rural whites, or Hispanics.  Too often the message has been delivered in a top-down, we’ll-tell-you-everything-you-need-to-know manner. 

We’re taking an entirely different approach at our disparities center.  We’re working from the bottom up.  We’re talking with and listening to our partners in various towns about issues from their perspectives.  We are learning which words have meaning to them in prevention messages and which don’t.  For instance, we learned that a message which states “get screened for oral cancer" is less effective than a message which states “get an exam for mouth and throat cancer.”  Our attitude is:  You help us design these messages, tell us what works, and we’ll roll up our sleeves with you to develop them.  

We’ll empower each other?

Absolutely.  This is all about empowering the members of the community.  It’s all community-based participatory research.  That’s why we’ve established community advisory groups and community liaisons from the word go.

So it’s a social marketing paradigm?

That’s right.  Let me tell you about our first studies.  We’re working in two rural African American communities.  One is in north central Florida; the other lies in the state’s western panhandle.  We’re already doing focus groups.  We’re learning from the members of these communities about healthcare access issues and listening closely to their conceptions of oral cancer and head and neck cancers in general.  From these conversations, we’re learning which communication channels work best in these communities to get the word out. 

Step two is a media campaign and testing the effectiveness of different strategies to deliver these public health messages.  At the same time, we’ll offer free oral cancer exams to folks in the community.  We’ll assess baseline knowledge, we’ll launch our media campaigns, and we’ll do post tests to determine if we’ve increased knowledge in the community.  A key point, though, is we’ll focus our efforts at first in one community at a time.  The second community will serve initially as our control group.  I also should mention that one of the unique aspects of our project is we are using evidence-based health promotion.  We’re tapping into existing health promotion theories and messages that work for other kinds of health behaviors and then translating them to target our individual groups. 

In other words, you start with a broad model and refine it through research to match the specific needs of your target audience?

Yes.  We have lots of great health promotion theories, but many of them were field tested on college students.  More needs to be known about what really works in disenfranchised communities.  We’re also learning how to recruit minorities.  If there’s been one big barrier to eliminating health disparities, it’s been not understanding how to appropriately and effectively recruit minorities for clinical research studies.  We are working with the community to enhance the recruitment and retention of minorities in our studies. 

Well, what are you learning along the way?

We’re learning . . . actually, confirming . . . that we just can’t enter communities with a top-down approach.  We must be respectful of the people and their culture.  We need to walk around upon entering a community, shake some hands, and put some names to faces.  That allows us to listen to what folks have to say, and we can begin to establish partnerships.  I could say much more on this topic, but the bottom line is we approach our conversations as truly interactive.  I’m learning from you, you’re learning from me, and we’re both learning together.

Then everybody speaks the same language and knows how to communicate.

Absolutely. 

In rural communities, healthcare needs typically are great.  Are you entering established healthcare clinics?  Or are you establishing the clinics in these communities?

The University of Florida’s College of Dentistry owns a number of dental clinics in the state.  We partner with the existing clinics and, of course, with the communities.

That’s really nice that you already have a clinical site in place and can enhance, refine, or improve what’s there.

Exactly.  But, you know, many of these are traditional disease-driven clinics.  We want to bring in health educators who can serve as single points of entry.  In other words, if somebody calls our 800-number during our media campaign and says, “Oh, my gosh, I’ve got a patchy white sore in my mouth that just won’t heal,” we have a trained professional in place to guide them through today’s complex healthcare system and get the care that they need. 

Is the center adopting a multidisciplinary approach?

The answer is overwhelmingly yes.  That’s one reason that I go around and talk about the center so much to try and get everyone – from microbiologists to psychologists to physicians – to join our research teams. Right now, the center is working with the College of Medicine, College of Dentistry, Health and Human Performance, and Public Health and Health Professions.  We’re constantly seeking and building new partnerships.

Where do you see the Center’s research interests evolving over time?

Well, through varied mechanisms we have a pilot project under way with the herpes simplex virus (HPV) and migrant farm workers.  Also, one of our co-investigators is working on a project that looks at how much hygienists and dentists are doing in relation to HPV and oral cancer.  We are doing some primary prevention, including tobacco and alcohol, with adolescents.  As mentioned, tobacco and alcohol are risk factors for head and neck cancers. 

So the potential to do good really runs the gamut?

Oh, the need is enormous, and so are the opportunities.  When we enter a community, people welcome us.  They want to get involved.  They want to help reach the members of their communities most in need.  At the same time, we have much to learn about which technologies work.  If we used cell phones to get messages out to people, for example, how broad is the coverage?  Smartphones?  Twitter?  These are questions that have yet to be answered. 

Thanks for your time.

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This page last updated: February 26, 2014