Reporting on Health Disparities

 

Ibby Caputo first met Terika Haughton at a cancer treatment center in Boston, while getting her weekly blood test. Caputo, a freelance reporter and editor, and Haughton, a finance professional, both underwent stem cell transplants there to treat leukemia. The two quickly bonded and soon grew so close they called themselves “blood sisters.” When Haughton died nine years later of transplant-related complications, Caputo was devastated.

Caputo decided to tell Haughton’s story, but she soon learned that to do so, she would need to dive deep into long-standing social issues. At first, Caputo thought pervasive racial and ethnic disparities in bone marrow donation had resulted in an imperfectly matched donor for her friend, who was Black. But she found there was more to it. Although scientific advances had reduced the disparities in bone marrow registries, social factors resulted in poorer outcomes for people of color. “Once I saw the papers that outlined the disparities, I saw how my story and Terika’s story fit in this bigger picture,” Caputo says. In the resulting BBC radio documentary, “A Perfect Match,” Caputo zooms in on her friend and herself to tell a broader story about racial and ethnic disparities in bone marrow transplantation.

Such differences in health outcomes between people of different races, ethnicities, gender identities, or other demographic traits are distressingly common in health care. Social, cultural, and political issues—not biological differences—drive these disparities. But increasingly, science journalists find themselves covering these inequities and their grim health consequences.

When done with compassion and humanity, reporting on health disparities offers rich narrative potential and can provide a revealing lens into broader sociocultural issues. But journalists who cover the topic must be nimble enough to bridge disciplines—examining social inequities and discrimination as rigorously as they do clinical trial results. They must, at times, justify their work with editors who reflexively view the topic as too political. And they must be deft storytellers, tactfully navigating cultural differences and portraying sources not merely as patients but as people.

Some journalists say the health-disparities beat is experiencing something of an awakening. “What has only just happened is that we’ve started to think about health coverage in a way that we’re looking at structural causes of disparities,” says Nina Martin, the features editor at Reveal. “If you’re looking at a particular demographic, it’s not enough to say someone has all these preexisting conditions that make them more prone to worse health outcomes. Ask the real question: Why?”

 

Connect the Dots

Most health disparities can be traced to the socioeconomic conditions and environmental factors that shape a person’s health. These factors are often grouped under the term “social determinants of health,” and they stem from a number of sources: discrimination on the basis of race, ethnicity, gender, caste, or religion; systemic and structural barriers to healthcare; and implicit biases that persist around the world.

Reporting on the fallout of these factors often means connecting the dots between disparate disciplines, and between scholarly research and individuals’ lived experience. When Martin and her former colleagues at ProPublica were reporting Lost Mothers, a series on maternal death and childbirth complications, Martin attended conferences about maternal health as well as meetings about reproductive rights. Despite having much common ground, sources in both specialties were siloed. “It was clear [the experts in each field] weren’t talking to each other,” she says.

Finding people with the right mix of expertise for a story—people who can speak both to the medical aspects of a health disparity and to the nuanced social factors that underpin it—can require some ingenuity. In seeking sources who can inform stories about health disparities, it helps to look outside the usual circle of researchers, says Amy Maxmen, a reporter at Nature. “You want people who are closer to the communities in which the disparities occur.”

Sometimes the best experts on a health disparity are not scientists or scholars but rather the patients and families who directly experience it, so it’s important to complement deep dives into research with people’s real-world experiences.

For her April 2021 story “Inequality’s Deadly Toll,” about how poverty and discrimination led to disproportionately high rates of COVID-19 in California’s Central Valley, Maxmen looked for researchers at smaller, regional colleges in the area. She found sources such as Tania Pacheco-Werner, a medical sociologist whose parents were farm workers, like many of the people in Maxmen’s story. Pacheco-Werner was able to identify key points that other experts might have missed—for instance, that many of the precautions being recommended by the U.S. Centers for Disease Control and Prevention at the time were simply impractical for the region’s agricultural workers to follow.

Sometimes the best experts on a health disparity are not scientists or scholars but rather the patients and families who directly experience it, so it’s important to complement deep dives into research with people’s real-world experiences. Often, “the way you learn about the issue isn’t only by reading a paper or asking a researcher,” Maxmen says. “Put aside anything you’ve read about how or why people are the way they are, and just listen to what they have to say for themselves.”

Martin and her colleagues wound up doing just that for their Lost Mothers series. After realizing that the CDC had collected scant data on severe maternal morbidity in the period after childbirth, the ProPublica team gathered the experiences of more than 4000 women who had suffered life-threatening complications after childbirth. They uncovered disparities in complications and death rates caused by differences in race, income, insurance coverage, and more. Martin emphasizes that, to discover these distinct axes of inequality, it was important to avoid the trap of only talking to certain communities and not others. If she and her colleagues had spoken only with Black women, for example, they wouldn’t have so clearly seen how those women’s experiences contrasted with those of their non-Black counterparts.

 

Paint a Full Picture

For journalists covering health disparities, connecting with the communities at the heart of their stories is an exercise in building and maintaining trust. This can be especially true for reporters who might be perceived as outsiders—either because they come from a different community than the one they’re covering or because they have little personal experience with the medical condition they’re reporting on.

Many journalists rely on community organizers and translators familiar with both language and culture to help them reach sources. But it’s important to avoid treating the reporting process as a transaction, and to be willing to immerse yourself in the community, says Chaseedaw Giles, the audience engagement editor at Kaiser Health News. “You’ll find people are willing to help you, but you have to go where they are.”

It’s also important to be attentive to cultural norms. While reporting on the exclusion of Indigenous tribes from COVID-19 vaccine trials, journalist Amanda Morris, at the time a reporter with The Arizona Republic, learned that some tribes preferred reporters to contact their spokesperson rather than the chief. Others were wary of trespassers. “They didn’t like getting requests to visit until you’d established a good relationship with them,” says Morris, who is now a reporter at The New York Times. “It’s important to build trust, show that you can report accurately and fairly.”

One way to initiate these connections is through mutual contacts. For her story, Morris spoke with the paper’s Indigenous Affairs reporter to learn how to connect with the right sources. When reporting a story on opioid culture amongst hip-hop musicians for Kaiser Health News, Giles turned to the publisher of an underground fan magazine for help reaching sources who were willing to open up.

Journalists covering health disparities within their own cultural groups say that doing so has its advantages: They may be better positioned to tap into fresh story ideas and perspectives, and they find they don’t need to “code switch” when communicating with interviewees. Giles, for example, writes song lyrics; her familiarity with hip-hop culture helped her find and report her Kaiser Health News story, which looked at links between the hip-hop community’s embrace of opioid culture and rising substance misuse in young listeners, often from Black communities. One simple way to build trust: Giles paid close attention to how sources referred to each other and let that reflect in her story. Although most publications’ style guides suggest referring to sources by their last names, Giles used their hip-hop names—“Gotcha” instead of “Mikiel Muhammad,” for example. “I wanted to portray these people how they are, and this is how they referred to themselves,” Giles says.

Compassion and respect are essential reporting tools, but they’re also important when it comes time to write the story.

When freelance writer Kayla Hui decided to report on the unique challenges and cultural issues that threaten the mental health of Chinese truck drivers in the U.S., she was drawn to the story largely because she’d watched her own father, a truck driver himself, struggle with those hurdles. With his help as a translator, she dove deep into his world, interviewing several of his coworkers. Still, the reporting required cultural sensitivity. Questioning older people about personal matters—particularly intimate issues such as mental health—is usually discouraged in Chinese culture in her experience, she says. “Every time I went into the warehouse I’d mentally prepare for these tough questions, and my dad would be looking at me like, These are questions we don’t usually ask.”

Hui quickly learned not to push for responses and to pay close attention to her subjects’ body language for signs of discomfort. Ultimately, “they were actually really receptive to questions about their personal lives and relationships,” she says. “I actually found comfort in their comfort with answering these questions.”

Compassion and respect are essential reporting tools, but they’re also important when it comes time to write the story. For a 2017 story about maternal mortality in Black women, Martin’s central character was CDC epidemiologist Shalon Irving, who died three weeks after giving birth. As a highly educated woman with good health insurance, Irving didn’t exemplify the average person who comes to many peoples’ minds when they think about who suffers the brunt of systemic racism. Still, Martin’s richly detailed portrayal of Irving helped drive home a potent point: If these problems happened to this person, what did it say about how the system might treat similar women enduring even more difficult circumstances? The key to making this framing work, Martin says, was to report as deeply as possible. It’s important to portray people bearing the brunt of their circumstances as more than just patients, victims, or representatives of their social group or class, Martin says. “Don’t just say that person has diabetes or this one was overweight,” Martin says. “Tell the person’s story in its fullness and show how the public health data is seen in that person’s life, in whatever individual way they are.”

 

Penetrate the Politics

Writing a story that melds public health data, hot-button social issues, and individual health matters can feel like a tricky balancing act on many levels. For STAT reporter Usha Lee McFarling, covering health disparities in some ways reminds her of the time she spent covering ocean pollution years ago: Some readers deny the problem’s existence and aren’t interested in coverage of the issue; others are familiar with the age-old story but think they’ve heard it all. “You have to penetrate that sort of veil of pre-knowledge to engage readers,” says McFarling, who has covered areas such as the unequal burden of COVID-19 on Filipino nurses and the barriers Black women face in accessing infertility treatments.

That can be difficult when dealing with polarizing topics like discrimination and racism. Scientists can sometimes be hesitant to wade into the fray, and so can editors. “It’s more like political writing than covering science,” McFarling says. “Or maybe a combination of both.”

Placing health-disparities stories can be particularly challenging for freelancers: Convincing an editor of the links between an observed health disparity and its underlying social determinants can require extensive—often unpaid—pre-reporting.

“To be writing about gender issues or racial disparities when the people helping shepherd your work are white men, even really smart ones, can be tricky,” says Martin, who recalls struggling with how to fit some of the Lost Mothers stories into the format of traditional investigative reporting. At first, she and her colleagues received feedback that they couldn’t just label an entire system sexist or racist. “People wanted to know where the accountability lay,” she says. But through the course of their reporting, the team reached the conclusion that the biggest problem was institutional racism in its many forms.

Placing health-disparities stories can be particularly challenging for freelancers: Convincing an editor of the links between an observed health disparity and its underlying social determinants can require extensive—often unpaid—pre-reporting. When working with a new outlet, it’s also important to gauge whether editors will be receptive to a story’s framing. To help make sure writer and editor will be on the same page, health journalist Melba Newsome advises freelancers who are considering a health-disparities story to look at a publication’s past coverage of sensitive topics and get a feel for how editors handle charged subjects. She recalls having to withdraw a piece from one outlet because the editor reframed her story in a way that cast doubts about her sources’ experiences.

For many journalists who cover the beat, reporting on health disparities is inherently personal—a form of truth telling that is inexorably linked to their own identity and values. Journalists should embrace those personal aspects of the beat, says Martin, who mentions that her reporting on Lost Mothers was shaped in part by her experience of having a sister who suffered life-threatening complications after childbirth. “The whole idea that if you’re a good journalist, it shouldn’t matter that you’re a woman, or your skin is of a certain color … it’s a little bit outdated here,” Martin says. “It does matter, and it should. You should draw on these experiences and not be afraid of them.”

In some ways, covering health disparities can feel like it borders on advocating—for equity and for the removal of structural barriers to health care. Caputo, for one, says that’s fine by her. “We choose to report the stories that are meaningful to us,” she says. “Society has lots of values, and some things need changing.”

“The society I want to live in is one that doesn’t have disparities.”

 

 

Julie C. Jacob

Jyoti Madhusoodanan

Jyoti Madhusoodanan is an independent journalist whose work has appeared in The Guardian, Wired, Nature, Science, and other outlets. Her reporting on clinical research and health disparities has been supported by fellowships from the Association of Health Care Journalists and the Knight Science Journalism program at MIT. Find her on Twitter @smjyoti.

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