Science Vs - The Fight to Fix a Racist Medical Gadget

Episode Date: September 22, 2022

The EEG is an incredibly important medical tool — and it’s been failing Black patients for decades. So today we’ll hear from two young, Black scientists who teamed up with hairdressers to do something about it. We speak to neurologist Dr. Jessie Baity, engineer Arnelle Etienne, biomedical scientist Lietsel Jones, and hairstylist Nina Woodley.  Link to our transcript: https://bit.ly/sciencevsEEG  This episode was produced by Taylor White, Meryl Horn and Wendy Zukerman, with help from Rose Rimler, Michelle Dang, Ekedi Fausther-Keeys, Courtney Gilbert, and Disha Bhagat. We’re edited by Blythe Terrell. Wendy Zukerman is the Executive Producer. Fact checking by Eva Dasher and Disha Bhagat. Mix and sound design by Catherine Anderson. Music written by Bumi Hidaka, Emma Munger, Bobby Lord, Peter Leonard and SoWylie. Thanks to the scientists we spoke to for this episode, including Dr. Christina Patterson, Dr. Pulkit Grover, Dr. Katherine Stavropoulos, Dr. Shannon Burns, Dr. Achuta Kadambi, Dr. Lauren Whitehurst, Dr. Zeniab Kone, Dr. Symon Kariuki, Nwabisa Mlandu, Carla Bailey, De-Shaine Murray, Dr. Jasmine Kwasa, Dr. Marieke Dekker, Prof. William Matuja, and all the researchers at Black in Neuro. Also thanks to everyone who talked to us about their EEG experiences. Special thanks to Ashwati Krishnan, Tarana Laroia, Evangeline Mensah-Agyekum, Bethel Habte, Brendan Klinkenberg and Rosie Guerin.  Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hi, I'm Wendy Zuckerman and you're listening to Science Versus from Gimlet. Today on the show, how a team of young black scientists joined forces with hairdressers to transform a very important medical device. Recently, there's been a lot of talk about how some medical tools don't work as well if you're not white. During the pandemic, it made big news that pulse oximeters weren't as accurate at measuring the oxygen levels of people with darker skin. These devices are not as reliable for every patient. Black patients were significantly more likely to have an inaccurate reading. There are issues with other stuff too. AI tools that screen for skin cancer,

a device that measures lung capacity. But our story today is about the EEG, a tool that doctors use to measure electrical activity in your brain. The EEG hasn't gotten as much attention as pulse oximeters. But the thing is, after decades of people ignoring the problem with them, things are finally starting to change. So meet Dr. Jessie Beatty.

She's a neurologist in Louisiana and is a very busy person. So we caught her on a morning commute. We often don't have people driving in the interviews. I know. Because I have little kids, so I was like, I don't want to hear screaming, and it's quieter in the car. So as she was driving along, Jessie told us about the EEG, or electroencephalogram.

She says that it's basically like a neurologist's Swiss army knife. EEGs are extremely important. We get them all the time. It's used to diagnose a bunch of conditions. Strokes, brain injuries, tumours, Alzheimer's. An EEG can help us figure out what's going on if someone's having a seizure. So it's a big deal if this thing doesn't work. And if you've never seen one, an EEG is this Medusa-looking contraption where instead of snakes coming out of your head, there's all these wires.

So it looks a little crazy if you're not used to it and you walk in and you see someone with these basically wires coming out of their head. At the end of each of those wires is an electrode, a little metal disc that sits right on someone's scalp. And that's how it picks up electricity from the brain. Now, the way EEGs are currently designed is that those metal discs need to have really close contact with your scalp. And if you have thin or straight hair, this is usually no problem. But if your hair is really coily or curly, like the hair that a lot of black folks have, this can be a different story.

Jessie says that EEG technicians can also have trouble with particular hairstyles, like if you've got a weave or dreadlocks. And this means that for a lot of black patients, getting a solid EEG can be a problem. Jessie remembers this one time that she saw all of this unfolding and it really stuck with her. A young woman was in the emergency room.

She'd had a few seizures, which was really scary, and she was getting an EEG few seizures, which was really scary. And she was getting an EEG to figure out what was going on. And she had a weave in her hair and the tech just could not get the electrodes on. The tech, who's white, couldn't figure out how to put the EEG on her head because the weave, which is sort of sewn into her hair, it was blocking the scalp. So the tech called Jessie, who's black, and told her, I can't get this EEG to work. And Jessie starts thinking about the patient.

Just my heart kind of immediately went out to her that it felt like I wanted to just kind of go down and see for myself what was going on because, you know, when they said that we may not be able to get the EEG, and I knew she had had multiple seizures, and I said, well, there has to be a way that we can work this out. We can't let this girl's hair prevent us from getting the EEG. So she rushes down to the emergency room. The tech felt like they'd run out of options. You know, the ER just wanted to just cut her hair out. And she was pretty stable, so there wasn't really a reason

to just shave off her head or cut her hair off. The patient was pretty out of it, and Jessie didn't want her to have to come to to find that her head had been shaved. And Jessie was familiar with weaves like this. So she was like, OK, I can help here. She sits down on the hospital bed near the patient, whose mum was there too. And together, they carefully started taking out the weave.

So we just sat there forever, just kind of trying to pull the pieces out so we could get to her scalp. After three hours, they got the electrodes on and the EEG worked. And I could see it up and running. I remember the tech and I just looked at each other like, like we kind of gave each other like a visual high five. Like, yes, we did it. Like we got it out. It's working. I was like, okay, all right, I'll see y'all later. And I just, you know, after many hours of being in the ER left, but I felt like I had a bond with that mom and that patient at that point and the tech. Jessie talked about this with our producer, Taylor White. If you weren't there, what do you think would have happened?

I don't think they would have gotten it. I think they would have just said, well, we can't get it. Oh, well. I think that's probably they would have gotten it. I think they would have just said, well, we can't get it. Oh, well. I think that's probably what would have happened. Jessie doesn't know for sure. Now, on one hand, this is a lovely story of a doctor who's helping a patient who needed her. On the other hand, this shows a total breakdown in the system.

Jessie is a busy neurologist. She shouldn't have to spend three hours setting up a routine test. And what happens when there isn't a Jessie around to help? Well, things can get even worse. Jessie told us about one patient who had his hair cut out in pieces. And we spoke to someone who left the hospital with no diagnosis at all. And this is how it's been for decades. But today on the show,

the folks who looked at this problem and did something about it. Science Versus is coming up after the break. Bumble knows it's hard to start conversations. Hey. No, too basic. Hi there. Still no.

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Welcome back. Today, we're looking at how an important medical device, an EEG, may not work as well if you're Black. And to tell you the story of how this is finally changing, here's producer Taylor White. She's going to take it from here. When I started looking into the EEG, I realized there were a couple different things going on here. One problem is that a lot of EEG techs in the U.S. don't really seem to know how to work with black hair. And we'll get to that. But the other problem is that this technology wasn't really designed with black hair in mind. And when I started looking into that, right away, scientists told me, you've got to talk to Arnelle Etienne.

Hi, Arnelle. Hey. Today, Arnelle is a research associate at Carnegie Mellon University in Pittsburgh, but she got started on this back when she was an undergrad there. I'm in the mind of a college student who is desperately trying to figure out what she's going to do with her life and if she's going to graduate anywhere close on time. Yeah, Arnelle was really struggling with her classes, but a professor saw something in her and she joined his lab. It's a lab that looks at how to measure brain activity and they work a lot with the EEG. And right away, when Arnelle got to this lab,

she was looking at the EEG and she was thinking. I'm not understanding how someone would put that on my hair. So I think immediately I kind of knew like, OK, if this is happening and no one has a solution for it, that means it's systemically happening that Black people are getting subpar care in this arena of health care. So Arnelle looked at this and was like, we've got to do something about it. So the EEG will work with Black hair, not against it. She started thinking about it, so the EEG will work with black hair, not against it. She started thinking about it constantly. I was going through it at that time, and like, I was just not very good at school, but this research gave me like, you know, raison d'être. She was turning this problem over in her head, and then one night, Arnelle had a breakthrough. Kind of an EEG epiphany.

And it came from a totally unexpected place. A dream. That dream was like so strong. It's like one of the few dreams that I really remember from that time. But I remember seeing a head figure with the cornrows in it and with the clips in it. And it was literally just rotating, but I could not forget it. Yeah. In her dream, she saw a totally new EEG design, and it stuck with her. And the dream, it actually made her think of this guy from the Bible, Joseph. I grew up in the church, so the story of Joseph is one of my favorite Bible stories, where he has a dream about, you know, ruling over his family, which you shouldn't tell certain dreams to certain people because it's going to sound wrong.

If you're a little rusty on your Bible stories or musicals with Donny Osmond, Joseph was the guy with the technicolor coat and his dreams ended up being super important. And so did Arnelle's. In that dream, she had seen these clips, little plastic things that would hold the electrodes between the cornrows. She told her lab mate about this vision, and pretty quickly, they designed this new electrode clip she dreamed up. They got a hold of a 3D printer. We had actually just like printed it out. And I'm just like, oh, look at my baby. The electrode clip is a couple inches long. And it sort of looks like a clear plastic dragonfly. The electrode has wings that are kind of their like defining characteristics. So it's like two wings on each side.

The idea is that someone's hair would be braided into cornrows, and then the person setting up the EEG would slide the little wings of the dragonfly under the cornrows, which would push the electrodes downward against the scalp. All right, so Arnel has these clips in her hands, and now it was time to test them out, see if they work. And who was one of

the first skinny pigs? Me. In the words of Snoop Dogg, I'd like to thank me. No. So Arnelle was like, la-da-da-da-da, and got her hair cornrowed and headed into the lab where her new clips were waiting. So now I have like my lab mates who are like in my hair, touching my hair. So it was a very intimate like thing to have to do. I felt like I should get her done. Get it done. I remember when we first started getting signals. First of all, I definitely felt a little emotional there.

I don't think there were tears, but there was a welling up inside. Yeah, it seemed like the clips were working. But Arnelle wanted to do a proper study, which meant she needed to test them out on more and more Black people. And that was tough. There weren't that many Black people at her school. I would literally just like find friends in the Black community and like be like, please come for my research. So she tests a person here and a person there. Finally, they got enough data. And here's what it showed.

Overall, they found that the EEG signal was 15 times better with Eclipse and cornrows than without them. 15 times. I just was really excited to see something that like literally came to me in a dream, come to fruition. I was just so happy to see something that I cared about really working. And I think in those moments is when we really started to see the potential. Okay, so that's Arnelle's potential solution here. She literally dreamed up new technology that could help the EEG work better for Black people. But then there's the other huge problem here. The fact that a lot of people setting up the EEG, they often have no idea how to work with

Black hair. So someone will go and get an EEG and have these terrible experiences. I talked to Black people who said that they felt really uncomfortable while the EEG tech wrestled with their hair, calling their hair difficult, and getting really frustrated. So I called up a scientist who wants to transform the way Black people get treated when they get an EEG. Her name is Lethal Jones, and she came across this issue as a doctoral student doing neuroscience research at the University of

Central Florida in Orlando. Hi. Sorry for being a few minutes late. I was hyper-focused on work. Lietzel was using the EEG a lot in her work. And when she saw these problems with it, she started worrying about what that would mean for the Black people in lab studies. Like when they run into researchers who don't know how to work with their hair. See, now I work with older adults in my lab. And the last thing I want is someone like my mother-in-law who grew up in America, you know, in the 60s and 70s, having faced all of this kind of discrimination in the South to overcome her distrust in the system to come and because the team is not adequately prepared to work with her hair type, you know, she experiences microaggressions or things like that, like that I never want someone to experience that. So it like shatters my heart.

Lietzel really wanted to fix this. And she started by thinking about where they could step in and change things. She figured, why not start with the hair? Like, maybe there are simple ways to style black hair that can work with an EEG. And it seemed like no one had really tested that. So that's what she decided to do. And because Lietzel's an EEG nerd, not a hair nerd, she needed a different type of expert. So she put out the word you know hey i need like the best you know the best stylist that y'all know who works with all hair types someone who can do it all i got that email on a day i was super duper busy but it caught me off guard and i was like oh this is different this is ninaley. She's been a hairstylist for more

than a decade, and she owns a salon in Orlando. And in that email, Lietzel told her all about what she was working on. I was surprised that no one's ever tackled this before, number one. And I was surprised because I had never put two and two together. I never thought about it. I couldn't imagine being in an emergency situation with my hair and needing an EEG. They would definitely be at a loss trying to figure out what to do. So it really prompted me to want to help. Nina was in. As a stylist, she's made it her mission to help people embrace their natural hair and care for it in a healthy way. So she and Lietzel teamed up. And this was their master plan.

Step one, find those styles that work well with black hair and the EEG. Step two, put those styles plus tips for working with black hair into a guide and then share that guide with the people who are setting up the EEG so they'll know what to do. So they started playing around and like Arnelle, Lietzel became a guinea pig. She was the only black researcher in her lab. The easiest subject we could find was me. So Nina was like, yes, let's start with your head. One of the first things they tried was this braided style. And it was kind of a gamble, because Lietzel knew people have traditionally been turned away

if they showed up for an EEG with braids. Lots of researchers assumed that braids would get in the way of the electrodes. But they gave it a shot. I had braided my hair into a crown around my head and came in the next day. So we decided to check how the signals would be affected if we were to keep the braid in. Picture someone's head of hair split down the middle with two braids on each side. These braids start at the front of the head and go back towards the nape of the neck, like a crown. And by the way, her EEG setup, it's slightly different than what we've been

talking about. It kind of looks like a swim cap and has holes for the electrodes. So one of her lab mates starts putting the EEG on Lietzel's head. Starting at her forehead, they carefully stretch the cap on and then put the electrodes into place. Like as we're going through each step of the process, we're like, okay, this is going well. Okay, this is going well. This is going well. And then it was time to see if it worked. They were looking at a computer screen, tracking something called impedance. Waiting to see. What we actually saw was so surprising.

We saw that there was actually improved impedance in all of the channels when I had the braid in my hair. And we were like, what? So that was really exciting. We're like, yes, it worked. Yeah, even with the braid in her hair, things were fine, which was surprising. What's going on here? Because, you know, maybe people have been turning away people that wear braids for EG, but they don't have to

because maybe the braids help. Lietzel tested the same hairstyle again on one of her friends. She was black too and had thicker hair than Lietzel's. It was really tightly coiled. And this braid worked on her too. It seemed like maybe this style worked because the braid pulled the hair tightly against

the head so the electrodes could get close to the scalp. Other scientists we reached out to agreed too. So the experiment seemed like a success and Nina and Lietzel added this braid style into the guide they were making for people who use the EEG. They also found another hairstyle that can work, a bun. That's in the guide too. And so are tips about what to do for other styles, like if the person has dreadlocks or a weave.

Nina and Lietzel's long-term goal is to get their playbook into as many hands as possible so that every tech, researcher, doctor is ready to do an EEG on anyone, regardless of their hair. And what's also been cool for Lietzel is that working on this made a huge difference for her lab mates. Like early in the project, one of them had to put the EEG on Lietzel's head. I just remember one of them, he was like so cute. He was like, hmm, okay. He was like, I can touch your head. I was like, you have to put the, go ahead, it's fine. What did he do? He was just very nervous. And I was like, you have to put the, go ahead. It's fine. What did he do? He was just, he was just very nervous. And I was like, I literally just shoved that on. Like, I'm sorry,

excuse my French. But things changed when Nina came into the lab. That same lab mate, when we brought in the hairstylist and she was teaching us about hair and hair care and all of this other stuff, the way he was like, oh, wow, you know, like, I didn't know this. I was never exposed to this. Like, you know, if they are exposed to this kind of education, it makes a world of a difference because the second time I came in, he was very comfortable. Like, he was all good to go.

So after I talked to Lietzel and Arnell about their work, I kind of got excited. They had both come up with completely different ways to deal with this EEG problem. And it felt like this could be the start of something big. But for things to really change, other people have to get on board here. For Arnell and Lietzel, they got a lot of support from their professors. But for the rest of science, it might be a different story. After the break, Lietzel and Arnell run into some major pushback. Metrolinks and Crosslinks are reminding everyone to be careful as Eglinton Crosstown LRT train testing is in progress.

Please be alert as trains can pass at any time on the tracks. Remember to follow all traffic signals, be careful along our tracks, and only make left turns where it's safe to do so. Be alert, be aware, and stay safe. Welcome back. I'm Taylor White. We just heard about two new solutions from Arnell and Lietzel about how to change the EEG. But pretty quickly, they ran into roadblocks. A big one was getting other scientists to take this seriously. One particular moment stood out to Lietzel. Her work was being presented at a conference. I remember towards the end of the presentation, there was one person that

was like, oh, well, you know, if you paid these people a thousand dollars, they would just shave their heads in the name of science. And I was like, first of all, I was like, who's these people? Um, and second of all, no, no, that's first of all, not okay to say, uh, I, I felt really uncomfortable, um, angry, viscerally angry. I went to scry, oh, scry, scream and cry. That's what scry is. It's such a small comment, but it represents everything that we as Black people hear in these predominantly white spaces.

It's that kind of attitude that we have to deal with. It builds up and builds up and builds up. Lietzel's gotten a lot of pushback for how she talks about this project. Sometimes she's gotten heated because it's so frustrating to her. And over and over again, scientists told Lietzel that people wouldn't take her seriously if she showed any emotion during her presentations. She talked about this with Arnelle. They've become friends throughout this process. It really frustrates me because it's that kind of attitude that got us to a place where our science is exclusive. And so if I'm actively trying to undo that, you can't critique me for taking a different approach. I'm bringing a lot more to the table that wasn't there before.

I am bringing my own chair to the table. And you can't sit there and tell me that my chair looks weird. You know, I know that's a really weird analogy. No, but I'm living for it. Science loves to, quote unquote, be objective. And like you said, in that quest to be data driven and not care this way, this way, it would behoove you to listen. You know, it would behoove you. Yeah. Another roadblock they hit had to do with data. No one had really tried to quantify these issues with the EEG.

The fact that it didn't seem to work as well for some Black people, and if there's no data on something, it can be hard to convince scientists that there's a problem. Lietzel's lab is actually working on a survey to try to get some of this data. Arnell came up against this too when she was trying to write a paper about Black hair and the EEG. Because she's one of the first scientists to publish on this, there aren't a lot of studies. So she had to get creative. Like to explain why the EEG we have now doesn't work for black hair, she had to talk about shrinkage. This is when curly hair bounces back after getting stretched, and it can block the electrodes. And it wasn't like there were a million scientific papers explaining shrinkage. So Arnelle found a great video of someone with curly hair.

She did like a time-lapse of the shrinkage. So I'm like, this is perfect. So I put it in my citations and I'm like, they're going to understand me. They're going to put this link in and they're going to know what I'm saying. And a reviewer said, she put a YouTube link as a citation. The paper didn't end up getting accepted, partly because of the citation. But Arnelle has made headway here. She's since put out a different paper describing how her electrode clip works. And it was really well received. Other scientists have asked how they can get their hands on her clips, and when her paper came out, there was a whole tweet storm about it. People called her clips incredible and long overdue. Arnelle's team just got a grant to continue this work. She's now part of a company that's selling

the clips to researchers. They're even being used at a children's hospital, where they're also working with a hairdresser. And they've gone international, partnering with researchers around Africa. In fact, one of Arnelle's lab mates just went to Kenya to work with neurologists and learn from them. And by the way, some scientists across Africa told us that they're working on their own solutions here. Like in South Africa, one group has made an EEG cap that stretches better to fit over black people's hair. Other scientists we talked to are figuring out how to work with different styles, like sectioning the hair into lots of little ponytails. Which brings us back to Lietzel and Nina. When it comes to their playbook,

it's now available online, and they're excited about what they've done so far. But they say it's still a work in progress. Here's Nina. I see that this list of helpful tools getting bigger and bigger, this is just the beginning. This is the tip of the iceberg. They'd like to see other EEG researchers and volunteers participate, like adding other hairstyles that might work, for example. Overall, Lietzel and Arnell both said that while this push to make the EEG better for Black people has been a fight,

it feels like things are going in the right direction. I think the work that we're doing, part of it is innovation, but a lot of it is awareness, I think. And I think we're definitely going to see a shift a couple of decades down the line. You know, these things take time. They take time. But luckily, it's actually moving a lot quicker than a lot of things move. So yeah, I think we're going to see a lot of good work coming out from both our groups and then also other groups as well. I like to think of Arnelle as the trailblazer for writing things down.

Like you were the fuel. You were the fuel that we needed. Oh, that means a lot. All right. I'll see you. Little cute circle of collaboration. I'll be seeing y'all forever. It's like collaborators for life.

I'm here for it. No, I'm really here for it too. All right. Bye. Bye. That's Science Versus. Hello. Hi, producer Taylor White.

Hi, producer Meryl Horne. All right. So how many citations are in this episode? Oh, man, I've never done this part. How many citations are in this episode? There are 56 citations in this episode. 56. And where can our listeners read about those citations? They can click the link in the show notes and that's where they'll see all the citations. Thanks, Taylor. All right. Bye. One quick note. We heard from Lietzel just

this week and she told us that she's putting her PhD on hold for now, so she's not currently involved in this work. This episode was produced by me, Taylor White, Meryl Horn, and Wendy Zuckerman, with help from Rose Rimler, Michelle Dang, Aketi Foster-Keys, Courtney Gilbert, and Disha Bhagat. We're edited by Blythe Terrell. Wendy Zuckerman is the executive producer. Fact-checking by Eva Dasher. Mix and sound design by Katherine Anderson. Music written by Bumi Hidaka, Emma Munger, Bobby Lord, Peter Leonard, and So Wiley. Thanks to the scientists we spoke to for this episode, including Dr. Christina Patterson, Dr. Polkit Grover, Dr. Catherine Stavropoulos, Dr. Shannon Burns, Dr. Lauren Whitehurst, Dr. Zainab Kone, Dr. Simon Kiryuki, Noah Biza Malandu, Carla Bailey, Deshane Murray, Dr. Jasmine Quaza, and all the researchers at Black & Neuro. Also, thanks to everyone who talked to us about their EEG experiences. Special thanks to Evangeline Mensah-Ajekum, Bethel Habte, Brendan Klinkenberg, and Rosie Guerin.