Working in the Community to Reduce Health Disparities

The Helping Her Live team (left to right): Maria Trujillo (community health educator/navigator [CHE/N]), Melinda Medina (CHE/N), Jana Stringfellow (CHE/N), Chela Sproles (program manager), Oreletta Garmon (CHE/N), and Jackie Kanoon, MPH (program coordinator)
The Helping Her Live team (left to right): Maria Trujillo (community health educator/navigator [CHE/N]), Melinda Medina (CHE/N), Jana Stringfellow (CHE/N), Chela Sproles (program manager), Oreletta Garmon (CHE/N), and Jackie Kanoon, MPH (program coordinator)
Epidemiologist Kristi Allgood of the Sinai Urban Health Institute (SUHI) in Chicago, Illinois, is on a mission to get women to return to the hospital to follow up on suspicious mammograms. For 9 years, she has been involved in a community-based initiative that supports women whose health (and health care) is likely to be overlooked. Allgood and her SUHI colleagues are part of a growing movement across the United States that aims to reduce the nation’s health disparities by increasing the uptake of proven clinical treatments.

Allgood, who is now 39, didn’t set out to focus on breast cancer research. After completing a master’s degree in public health from the University of Illinois, Chicago (UIC), she was recruited to SUHI to evaluate HIV education in Chicago’s Mount Sinai Hospital. But Steve Whitman, SUHI’s director, drafted her into a new initiative attempting to mitigate the racial gap in breast cancer survival in the city where she grew up.

Funded since 2007, the Helping Her Live: Gaining Control of Breast Cancer project supports a team of community health care workers who help women in Chicago’s African-American and Hispanic communities navigate breast cancer screening, diagnosis, and treatment. Women in these communities, as in the rest of the country, are chronically under or uninsured—and it’s common for women without insurance to fail to return for a follow-up biopsy. The reasons are complex, but mostly have to do with “fear, time, and money,” Allgood says. The upshot: Breast cancer in this population of women tends to be diagnosed at an advanced stage, making it difficult to treat and offering grimmer odds of survival.

This breast cancer survival gap hasn’t always existed, explains Bijou Hunt, also an epidemiologist and Allgood’s colleague at SUHI. Twenty years ago, a woman’s race had little bearing on her chance of dying from the disease. Then, starting in the 1990s, white women began to benefit from numerous advances in treatment for breast cancer. African-American women didn’t share the gains.

A study published in 2014—Hunt was the lead author—found that in Chicago between 2005 and 2009, African-American women with breast cancer were, on average, 48% more likely than their white counterparts to die from the disease. That makes Chicago the nation’s seventh deadliest city for black women with breast cancer, but the same pattern is seen in many other major U.S. cities. Each year, nationwide, the disparity equates to 1700 extra breast cancer deaths among African-American women, or about five per day.

Figures like these motivated SUHI’s director to seek funding to help close the gap. In 2005, he secured half a million dollars to start a project that employed two hospital-based health care workers who would assist patients during procedures, provide guidance in the referral process, help physicians communicate medical concepts clearly, and sometimes “literally walk patients from place to place” at the hospital, Allgood says.

When the Avon Foundation for Women provided an additional $1.95 million in 2007, the hospital-based program expanded into the community and took the name “Helping Her Live.” Allgood took a road trip to New York City’s Harlem neighborhood, where a project with similar aims had been running since the early 1990s. She returned to Chicago full of fresh ideas, ready to recruit and train additional health care workers who, in contrast to their hospital-based peers, would work out in the community.

This story ties in with Science’s special issue on breast cancer.
Today, these community-based health care workers help women access routine breast screenings, and work to ease delays in test results and follow-ups. They attend community events, present workshops, and canvass women one-on-one to educate them about the reasons behind health disparities, how mammograms work, and how cancer is treated. Allgood describes them as compassionate, effective advocates and well-respected community members who understand the social issues facing the patients they serve. They are, Allgood says, the key to the project’s success.

Having got the ball rolling, Allgood was charged, along with Hunt, with evaluating the hospital and community-based projects. The two epidemiologists assemble mammogram results, pathology reports, and clinicians’ suggested treatments, and they combine them with data collected in the community. They then go to work analyzing it.

Last year, the project’s hospital-based workers saw more than 3000 patients and assisted them on 12,000 occasions in 50 distinct, documented ways. Over 3 years, the community-based health care workers responded to 5000 requests for help.

It is too early to report whether the project is reducing mortality rates, Allgood says. Their analysis shows, however, that their programs are radically improving some interim metrics. Today, 95% of African-American women in the project’s target communities return for a checkup after a suspicious mammogram, up from 66% before the project began.

Wanted: teamwork, statistics, and a passion for social justice

Cancer geneticist Rick Kittles, whose work at UIC identifies genetic and environmental factors that lead to cancer health disparities, says that statistical savvy is important in the work that Allgood is doing—but that social savvy is important, too. Whitman echoes that sentiment: “Too many young people coming into the field of epidemiology … do not know enough about the world and how it works,” he says. The work is highly interdisciplinary and depends on effective communication among scientists, staff, doctors, and patients—as well as with funders and policymakers.

Fundraising, in fact, is one of the job’s biggest challenges. “We work tirelessly to either keep the funding or find new avenues to fund [our] programs,” Allgood says. Allgood, Hunt, and the other epidemiologists write reports for and make presentations to stakeholders who can influence the health policies adopted by the city government.

To get involved in health disparities work, one must, of course, have the basic credential: at least a master’s degree in public health, Whitman says. One needs hands-on experience in gathering, curating, and analysing data; statistics is becoming ever more important as the field becomes more data-driven.

Alongside such training, those pursuing this career should have a passion for social justice and be ready to think critically about how society-level decisions impact individual health, says Jennifer Orsi, a data analyst at Walgreens in Deerfield, Illinois, who previously worked as an epidemiologist at SUHI. An affinity for teamwork is also essential.

The SUHI team is growing. Right now, SUHI is recruiting a community health educator. Since Allgood joined SUHI, the number of epidemiologists has doubled. Each is waging war against a different disease: asthma, diabetes, and HIV, along with more complex conditions such as chronic obstructive pulmonary disease and obesity. Many approaches are shared among projects. “We all work together to help each other,” Allgood says. “It is really nice to have that backup.”

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Profile: Jon Heras, Seeing Is Believing

The cold sea fogs of Scotland have inspired many artists, but as a boy Jonathan Heras saw instead the North Sea oil fields and the prosperity they brought to his hometown of Aberdeen. So he became an engineer, earning a Ph.D. in chemical engineering from the University of Cambridge in the United Kingdom. But today, he makes his living as a graphic artist, and although his art is not inspired by Scotland’s scenery, his renderings of science are no less vivid than its raw and boisterous coast.

“Getting things to look authentic is the real trick. You need to add dirt and imperfections”. — Jonathan Heras

From the science behind the Large Hadron Collider experiment at CERN, the European particle physics lab; to the construction of the Bloodhound SSC, a car capable of speeds above 1000 miles per hour; to a portrait of a microscopic bacteriophage that recently received an honorable mention in Science magazine’s Visualization Challenge, Heras’s illustrations and animations depict a wide range of scientific concepts.

Heras, now 30, first explored animation in his early 20s when he and a university friend, Ivan Vallejo, directed a satirical stop-motion movie called The Polos of Death. Recorded on location in a college dorm room, the film features the action figure Boba Fett, from Star Wars, battling to the death a tribe of bloodthirsty Polos — a peppermint sweet — set to a soundtrack of Burt Bacharach and the Bee Gees. The film was “just a bit of fun,” Heras says, but he enjoyed the process of animation because it required him to be meticulous — a skill he seems to possess naturally and one he came to rely on during his Ph.D.

During his graduate studies in Cambridge’s Department of Chemical Engineering and Biotechnology, Heras looked at the flow patterns of liquid and gas through a catalytic converter using magnetic resonance imaging. His research subject proved difficult to convey to an audience at conferences, so Heras made short animated films of his flow-pattern data. “People don’t always remember what you are doing in terms of your research, but they do seem to remember you as the guy with the flashy animation,” he says, laughing.

Heras found his graduate work “quite frustrating,” he says. “The graphics were much more rewarding.” And so in his spare time he took on side projects that relied on his creative hobby. In one project, he was commissioned to make a safety video for his department. “We were surprised at how sophisticated a film he turned out,” says Mick Mantle, a chemist at Cambridge. “It became compulsory viewing for all new engineering students.” Heras “was a very, very bright student,” Mantle says, “but he preferred the image analyses side of things.”

In spring 2006, a few months from the end of his Ph.D., Heras set up as a freelance illustrator under the name Equinox Graphics, specializing in scientific visualizations. “Working from home was quite a struggle; you find that you work all sorts of crazy hours. I often watched TV at 5 in the morning because that was when I was up and working.”

Within 3 years he had enough work to need help, so he enlisted the animation skills of his friend James Waldmeyer, whom he knew from his undergraduate days. In 2009, he and Waldmeyer moved out of Heras’s spare room and into new premises on the outskirts of Cambridge. Heras still likes his home comforts, though, and sometimes works in his slippers.

Heras’s work relies on large amounts of computer processing power. He splits his workload across a network of 10 computers; even so, a frame of animation can take an hour to process. “If you have 25 frames per second and a minute of animation, it quickly adds up,” he says. The cost of all that computing power adds up too, and that affects his bottom line. “I know I could definitely earn more as a chemical engineer, but I wouldn’t have the job satisfaction I have,” he says.

Heras believes that keeping his work varied is key to staying successful. “It would be easy to just churn out many of the same images, tweaked to suit a particular client, … but this would be boring.” Instead, Heras picks projects he knows little about. He has animated a BMX trick that explains the basic physics of flying through the air on a bike (for the 100th anniversary celebration of Einstein’s Annus Mirabilis papers in 2005); a short documentary for the European Space Agency’s mission to orbit the sun with a satellite; a clip of an operation in which a device was inserted into a human vein to prevent a serious blood clot; and many more.

Heras’s first step toward creating an image is to learn as much as possible about the subject. “We start by researching on Wikipedia, and then we go to more detailed and accurate sources to fine-tune our understanding,” he explains. “We try to make [the] gulf of knowledge between us and the scientists as small as possible.” Heras and his partner come up with ideas and then meet with the client. Once they agree on the scope of the work, the real work begins. “Some of the images take a week to create,” he says.

Heras says he relies on what he already knows about science. However, the work requires some artistic license. All illustrators have to make these sorts of calls, he explains: “filling in the colors, the textures, the speeds that things move.” Heras cites the award-winning animation called The Inner Life of the Cell, made by Harvard University to take its biology students on a journey through a cell’s microscopic world. “It’s an amazing visual,” Heras says, but the space inside a real cell “is jam-packed with all sorts of things that are buzzing around. … It is not this vacuous space where you can see everything clearly,” as it is in the video. The video’s illustrators chose to simplify the cell so that viewers could more easily see what’s going on. Sometimes, he says, such editorial decisions are necessary, but they can be hard to make.

On the other hand, scientific illustrators must always be careful to make sure things don’t look too clean and pure, Heras says. “Getting things to look authentic is the real trick,” he says. “You need to add dirt and imperfections.” Knowing how to do that takes time, especially if you are self-taught. Heras says he picked up tips like these — indeed, most of what he knows about the craft — by reading blogs and online forums.

After so many years of formal education, earning a living from skills learned online and picked up in a college dorm room might seem strange. He says he still hasn’t completely convinced his parents that his career choice is a good one. But he hopes that in time they’ll come around, since he’s making a living and creating interesting things. Just as in his illustrations, seeing is believing.

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