Finding the right people brings series on prostate cancer among black men to life

One of the most complicated and interesting heath care debates I have covered is that over the value — or lack thereof — of prostate cancer screening. So when a cancer researcher at UNC-Chapel Hill and I were talking about colorectal cancer and she casually mentioned that African American men in North Carolina suffered from some of the world’s highest rates of prostate cancer, and that no one fully understood why, I was intrigued.

I poked around the results of a decade-old Pentagon-funded research project into the disparity that had come up with a few answers about what was going on, but far from all of them. And even back then it got little notice in the media.

There wasn’t much else to work with, but one crucial fact had gotten little attention during the furor in 2011 when a national panel had recommended men not be screened for prostate cancer: The data used to support that recommendation included hardly any black men. 

So there clearly was a story to tell, one about the information that black men were or weren’t getting about screening, in light of the fact that they were nearly two times as likely to get the disease and nearly three times as likely to die of it in North Carolina. 

My grandfather, an uncle and the brother of a good friend had developed aggressive forms of the disease, so I had at least some insight into the dilemmas posed by the complexities of its diagnosis and treatment options.

One key challenge became clear quickly: I was dealing with a subset (men) of a subset (African Americans) of the state’s population. So the people affected, the people I needed to write about, would be spread thinly if you just considered the population of the state. 

I needed data to help me focus the reporting in a geographic sense, to tell me where to go to have a reasonable chance of pulling together the right stories to clearly show what was going on.

First I pulled simple census data to determine which counties, towns and cities were majority African-American. But that wasn’t good enough. Were there places where this disparity was not just obvious, because the local African America population was unusually large or proportionally larger, but where black men were doing worse than, say, black men at the other end of the state?

The National Cancer Institute and state-kept statistics provided at least some picture of which parts of the state had black men who were most at risk. But there were so many counties that stood out. Reporting a project like this is such a large commitment of time and resources that you simply can’t scrimp on questions such as where, in an entire state, you should report from.

No one had done this before, and no one was likely to second-guess me, but it was important, morally and logistically, to do it right. If I went to the wrong place, I could spin my wheels for days or weeks trying to find the right people. And I just didn’t feel like the data was precise enough to launch my reporting on it.

Luckily, UNC-Chapel Hill had developed a new, multimillion-dollar “big data” system for crunching cancer data, blending it from a wide array of sources that I wouldn’t normally have access to, such as individual Medicaid patient records. I had to talk with half a dozen researchers there to get permission to use this powerful research tool for journalism, as staff time was usually booked up with various research projects. But they saw the value of what I was trying to do, and essentially wrote up a small research study on my behalf, which required getting approval from their scientific research ethics board.

In sorting through the data, they generated a set of maps that ignored county and city borders, and instead focused on finding “hotspots” as small as a few homes that were identified by the proximity of aggressive cases to each other. This was too complex to explain, in some ways, to readers, so we didn’t run it with the stories. But it was a big help in telling me where to go to find the people I needed to talk with.

When I saw that Bertie County and its neighbors in the northeastern part of the state had a heavy concentration of hot spots, I knew that would be one of the places I had to visit.

We have 100 counties in North Carolina, and Bertie County is a couple of hours by road from the News & Observer’s readership base, but somehow I keep winding up there, for stories on the coast real estate boom and bust, a series of deadly tornados, and even archeological digs. It’s a beautiful, rural place of huge rivers and sounds and fertile black soil that sprouts the nation’s finest (and largest) peanuts. But it is extremely poor, with a tiny population spread thinly, few jobs and literally the tax base equivalent to that of a decent intersection in Raleigh, the state capital.

When public health experts have tried to attack this health disparity in a few places around the country, they have typically used two main channels for outreach: The churches, which are a mainstay of African American communities; and to a lesser degree barber shops, where barbers, properly trained as lay heath advisors, can spread information to their customers. 

I knew I would talk with ministers and barbers, and I did. They’re in the stories. But not everyone goes to church, and not all men go to the barber.

So I went to the Little Golden Skillet, ordered one of their painfully sweet ice teas and a fish sandwich, and just sat down and started talking with people. I talked with them about health care: Where they get it, their insurance situations, what they had and hadn’t been told about prostate cancer, who they received that information from. In a sense, that’s how I did much of the field work. Just talking with people. And then asking them who else I should talk with.

In cases like this, with such a thin, widely spread population, you can use key gathering spots to filter for you the right people to talk with. But if you don’t know them, you have to ask around. 

A similar method is to find the right community leaders and let them be your guides. 

A family in one of the counties I focused on had started a small, health-oriented foundation in honor of their dead brother. It was focused on a range of heath issues, but had done a fundraiser for prostate cancer screening. So I called them.

They arranged a community meeting — really a roundtable — of black prostate cancer survivors from several of the affected counties, including several who were known for being outspoken on the risks posed by prostate cancer. The lure we used was a Subway sandwich dinner and camaraderie, and nearly two-dozen people attended. I brought a simple form to hand out with just a few basic questions about their cases and how many other black men they knew, inside and outside of their families, who had been diagnosed. I collected it as they left.

This event was partly a tool to help me find subjects and build sources in the community, but also part of this project’s outreach: I and a couple of experts among them were able to share the latest information on the full nature of the risks, and on the complexities underlying that national recommendation on screening. They in turn pledged to spread the word in their own communities, starting with their male relatives. 

We talked for nearly two hours. Two of the men ended up appearing in my stories, while others pointed me in helpful directions for finding the right local health care workers, the right ministers and a barber to talk with. And every man there ended up, in some way, informing my stories.

I’m not a minister or a barber. I’m not black, nor do I live in one of the most affected communities. I’m not a doctor, statistician or a researcher. So I needed all kinds of sources and experts who could point me in the right direction, and then review my thinking on various aspects of the project as it developed.

Finding those people took most of the time and energy I’ve put into this project. It required reading several-dozen research studies, and then focusing on those with local authors (doable since there is an unusual amount of high-level cancer research in the state), and then asking them who else I should talk with. And talking with people working in health care in the affected communities and asking them who else to talk with. And talking with ministers, and prostate cancer survivors and asking them who else to talk with. Data is a powerful tool, used well, but projects like this are really about chatting up people.

Because the series was only recently published, it remains to be seen what the ultimate impact will be. But doctors, researchers and public health experts have called to say they’re thrilled with the attention that the once-obscure problem has received. And the incoming state assistant health director called this reporter at home to talk at length about what the state could do, and even requested a longer meeting. 

There’s now much more information out there on the topic that is accurate and, we hope, simple enough to cut through the complexities.

Here is a list of Jay Price's stories:

Prostate cancer attacks NC black men at startling rate

Change in screening guidelines incites confusion

Duke expert: New prostate screening guidelines not accurate

UNC expert: Regular care is key to prostate cancer diagnosis 

In poor, rural South, reaching black men at risk for prostate cancer is difficult

NC barber has 30 good reasons not to ignore prostate cancer symptoms

North Carolina state official: Funding to fight prostate cancer is tight

5 ways to fight prostate cancer

[Photo credit: Ethan Hyman/NewsObserver.com]