Health Disparities, Research Funding, And Health Equity Tourists : Short Wave The COVID-19 has exposed longstanding and massive health disparities in the U.S., resulting in people of color dying at disproportionately higher rates than other races in this country. Today on the show, guest host Maria Godoy talks with Usha Lee McFarling about her reporting — how new funding and interest has led to increased attention to the topic of disparities in health care and health outcomes, but also left out or pushed aside some researchers in the field — many of them researchers of color.

You can follow Maria on Twitter @MGodoyH. Email ShortWave@NPR.org.

White scholars can complicate research into health disparities

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MADDIE SOFIA, BYLINE: You're listening to SHORT WAVE from NPR.

MARIA GODOY, HOST:

Hey, there. Maria Godoy here, guest hosting on SHORT WAVE for a few weeks. I'm a correspondent on the science desk. I cover health. One of the stark realities of this pandemic is its uneven impact by race and ethnicity. COVID-19 has exposed longstanding and massive health disparities, resulting in people of color dying at disproportionately higher rates than other races in the U.S. Stories about it are increasingly in the news across a wide variety of organizations and institutions and in academia and scientific journals. But science correspondent for Stat News Usha Lee McFarling says research into health disparities has been around for a long time.

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USHA LEE MCFARLING: You know, it dates back to W.E.B. Du Bois, you know, more than a century ago. And generations of researchers have cared deeply about these disparities that are really obvious and clear if you look.

GODOY: What she says is new is the collective national reckoning with those health disparities, which comes amid a broader reckoning with race that followed the murder of George Floyd. That's led to increased funding for studies and new interest from top journals.

MCFARLING: And that's leading to a mentality where people are just clamoring to get into the field, some of them with no background.

GODOY: And the scientific publishing world is also having to confront its shortcomings. JAMA, the Journal of the American Medical Association, dedicated an issue in August 2021 to racial and ethnic health disparities. But Usha noticed something.

MCFARLING: There were five research articles. Not a single one of the lead or senior authors was Black. And just one of the co-lead authors was Hispanic. So this issue, while trying to address systemic racism in medicine, is really recapitulating the entire problem.

GODOY: Usha reached out to JAMA for an interview. They declined.

MCFARLING: What they did say through a spokeswoman was that they don't consider demographics in who they publish. They just want to publish the best science. And what critics would say is that's too neutral of a stance. You really need to - if you're going to fight racism, you need to intentionally push back against it.

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GODOY: Today on the show, we're going to talk to Usha Lee McFarling about her reporting, how this new funding and interest has led to increased attention to the topic of disparities in health care and health outcomes, but also left out or pushed aside some researchers in the field, many of them researchers of color. This is SHORT WAVE, the Daily science podcast from NPR.

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GODOY: So I want to start off by talking about Elle Lett, one of your sources. Tell me who Elle is and what happened to them three years ago.

MCFARLING: Elle is incredible. She's a statistical epidemiologist doing a postdoc and is working on her medical degree. Three years ago, she, you know, with her mentor, wrote a paper examining the lack of Black physicians in the workforce and the lack of Hispanic physicians in the workforce. And she had published this paper in PLOS ONE, which is sort of a good journal but much smaller. In the JAMA special issue that just came out in August, there was an article on the lack of Black physicians in the workforce by a white physician. And what she told me in our interview is that she had submitted that work to JAMA three years ago. They had absolutely no interest. They didn't even send it out for review.

GODOY: Wow. So when it came from Elle, there was no interest. Three years later, it's up there in a special issue.

MCFARLING: Right. And now because it's - this new article is in a much higher profile journal, that will be the one that gets cited. That will be the one that people turn to. So she is expecting to be literally erased from the record.

GODOY: And Elle is a researcher of color, right?

MCFARLING: Yeah. She's a Black, trans, femme researcher.

GODOY: You write that health equity researchers welcome the new interest in their field and their new white allies, but it's complicated. Tell me about what you call health equity tourism. What does that term mean?

MCFARLING: Yeah. That's actually Elle Lett's term. So we'll give her - let's give her credit for it. But basically, this is a field that prides itself on being inclusive and not turning anyone away. So these are really hard and difficult conversations. A lot of the researchers entering the field are white, very well-funded, you know, from top research universities with all kinds of support behind them. But too many people are coming in without background, without knowledge, without humility and just thinking they can just read one article and, you know, and do a study.

GODOY: And this has been a field, up until now, dominated by people of color, right?

MCFARLING: It really has. I mean, there have been some excellent - many of the top health equity researchers are white. There are people of all colors. But it's one of the few areas where minority scholars have really been the leaders. And if they get pushed out, you know, it's especially painful.

GODOY: But to play devil's advocate here, you know, someone might hear this and think, wait, isn't it a good thing that racial health disparities are finally getting the attention they deserve? Why is it a problem to have all these newcomers? And you mentioned something, that bad science is getting done from top researchers. That sounds confusing.

MCFARLING: Yeah. No. It's true. I mean, you don't want to push people out. And sometimes, maybe it's good to not have a background and bring an entirely new perspective. You might have, like, a breakthrough thought. But the problem is, if bad work is done, that will pollute the scientific, you know, record. And as many of my sources put out, then they'll have to spend all these years sort of overturning that bad work. You know, it's - this is really important work because, literally, these people are trying to save lives by ending health inequities. So you can't have people sort of traipsing in, publishing one or two studies that aren't good and leaving. It's - it just could harm this field where, literally, lives are at stake.

GODOY: There one example you gave in your article. It was offered by Jorge Caballero, who is a researcher. And he was pointing to one high-profile study looking at COVID death rates that were higher in Black patients than in white patients because they were more likely to get treated at poor-performing hospitals. I mean, that sounds important. What was the problem with that study?

MCFARLING: Well, yeah, that study was widely covered in the media. And a lot of people were like, well, this is good because it's exposing systemic racism, you know, that quality of hospitals, which is based on the quality of a residential area, you know - which is, you know, a huge issue that's involved racism and redlining and why certain neighborhoods are poorer than others. So we really need to highlight this. But Dr. Caballero looked into the data and just found that the study - even though these are sort of top researchers in their own field, he feels that they're not really schooled in health equity research because what they did was they pulled together white and Hispanic patient death rates and compare those to Black death rates. And we all know that COVID death rates were very high in Hispanic populations. So that - you know, you shouldn't add them to a white group and compare them to Blacks.

So that underestimated the actual higher death rates. And they feel that this - you know, this was poor work and that any basic health equity researcher would have seen that right off the bat. And so there's many, many studies like this that are kind of sneaking into the literature. And once - you know, once they're published and unless they get retracted, which rarely happens, you know, they stay there. And they get cited. And they continue on. And people - you know, people look to these journals, to JAMA, the New England Journal of Medicine and others, doctors look to these for guidance and to make decisions. So if there's poor research in there, it really trickles down into patient care.

GODOY: And, well, one thing we talk about is, like, who gets to do the research. And who does research has to do with who gets the funding for that research. And one thing you wrote is that the new funding for health disparities research that's coming into the field, some of it is structured in a way that favors better-resourced researchers, which often means researchers of color get left behind. Can you talk about that? You gave an example of new NIH grants.

MCFARLING: If you go to, you know, a big research university, like a University of California campus or, you know, Harvard or Duke, they have huge offices of people that are there to help you fill in your grant, make sure all the details are right. These grants are really a heavy lift to submit. Researchers at smaller universities or historically Black colleges and universities, they often might have, like, one person to help or have to submit the grants on their own, you know, all while teaching and trying to do the research and working on community-based research, which involves, like, a lot of meetings with the community, and very slow and labor-intensive. So they're kind of already behind to begin with. So they're really calling for NIH to equalize the playing field and make it easier for people who don't have all those resources behind them.

GODOY: Another thing you mentioned in your reporting is that some grant applications are phrased in a way that seems sort of geared toward white researchers.

MCFARLING: Yeah. This is from another amazing source of mine, Dr. Whitney Sewell, who's a lecturer at Harvard. She works on HIV prevention in Black women. And she's filling out this grant. And in addition to all of the other things you have to fill out, there was a whole section - how will you contribute to diversity efforts, you know, at your new institution? And she said, hey, wait a minute, you know? Like, I'm an only - like, I'm a Black woman. I'm probably the only one in my department. Like, I just contribute by existing. This was a specific grant for underrepresented minorities. So it was already targeted to people who, you know, are underrepresented. So - you know, so her feeling is it's that added burden. It's what people call the minority tax. Like, you have to not only get the job and do the research and get the grants, you know, you have to be the chief diversity officer as well.

GODOY: You write that researchers of color feel they pay a minority tax in another way, too, in the sense that they're often being asked to comment on or contribute to the work of newcomers to the field. But they're not necessarily getting any credit for it or advancing their own careers. Tell me more about that.

MCFARLING: Yeah. It's a really important point. And I don't think people are asking for a quid pro quo. But they're saying, look; if you want my ideas, if you want me to review your grant on health equity research, if you want to use my data that I collected on, you know, COVID vaccination rates in, you know, minority populations, you know, maybe you should also ask me to be on the grant with you. Maybe you should ask me to be a co-author. Their field is much more collaborative. So they are used to working together and not just getting asked for something and, you know, never hearing from the person again. And I think some of the white researchers may not even realize - because this is how they've operated, you know, may not even realize what they're doing is problematic.

GODOY: Do you think that journal editors are becoming more conscientious, thinking about whose voices get heard? - because, of course, journals play an important gatekeeping role in science in terms of what research they publish and whose research they publish, and who they asked to review that research.

MCFARLING: I think they really are. And I know JAMA has been a lightning rod for a lot of these complaints. But many, many journals have been problematic and in many of the same ways. They are - the bigger journals that have budgets for hiring are changing. New England Journal has hired a deputy editor that has experience in health equity research. Health Affairs has made a focus of this and is using established writers to mentor new and young writers of color so that they can get published.

GODOY: Oh, wow.

MCFARLING: I talked to a journal - an editor of a nursing journal who said, you know, it's been a problem. It's hard to find people to review and - you know, with the minority tax, you know? Many people of color are overloaded. And they're being asked to do so much. But, you know, people are out there. My source is like, we are willing to review. We're willing to help. We know this is important. We're not being asked. So there's some kind of disconnect, where the editors of journals are saying, there's not enough people. There's no one out there. And people out there are raising their hands saying, call on me. So I think, you know, as Alan Weil of Health Affairs told me, it's not about giving more work to the few people we've let into the club, it's about inviting more people in. And the question is, are you looking for those people, because they are out there?

GODOY: Any last thoughts and reflections on your reporting? You know, what would you want a listener to walk away with after hearing this conversation?

MCFARLING: Yeah. Thanks for asking. I - you know, I hope people don't think this is insider baseball, like some academic, medicine, journal intrigue. This work is- you know, we have a country where people of color are dying at higher rates of almost any disease you look at, whether it's COVID, diabetes, Alzheimer's, cancer. These - this kind of work is so important because it's trying to end these disparities. And it's trying to save lives.

GODOY: Thank you so much for taking the time to speak with us.

MCFARLING: Thank you.

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GODOY: This episode was produced by Thomas Lu, edited by Gisele Grayson and fact-checked by Rasha Aridi and Margaret Cirino. I'm Maria Godoy. Thanks for listening.

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