Like any savvy mother-to-be, Queens, N.Y.-based journalist Kimberly Seals Allers made an informed decision when it came to selecting a hospital in which to give birth. She read articles and parenting blogs, scrolled through reviews, and scanned media rankings. "I really was trying to make sure I went to the best place, quote unquote," she says.
Seals Allers arrived with high expectations, but what happened next was jarring.
"Everything that I read was the standard practice of care I had to fight for," she recalls.
Seals Allers says the nurses chastised her for requesting pain relief. She ended up giving birth to her daughter Kayla by cesarean section, and was never, she says, given a satisfactory explanation for why she couldn't have a vaginal birth. Her daughter was given formula when Seals Allers clearly stated she was breastfeeding.
"I have never felt so helpless in my life," Seals Allers says in the recently released documentary film The Big Idea: Birth Without Bias.
Seals Allers, who has written books on pregnancy and breastfeeding, says she wanted to do something to make it easier for African Americans and other people of color to navigate the health care system during pregnancy and birth. She created the mobile app Irth, which collects and shares health care reviews from parents of color. (The name comes from "birth" – but as Seals Allers says "we dropped the B for bias.")
Irth users are asked to rate and review how well their needs and requests were met, and whether they faced discrimination or bias. In addition to creating a repository of reviews by and for Black and brown birthing parents, she hopes to gather data that can be used to improve the status quo in hospitals.
Sharp disparities between birth outcomes between Black women and women of other races are well-documented in the U.S. According to federal data, the maternal mortality rate among Black women in 2021 was nearly 70 deaths per 100,000 live births in 2021 compared to 28 for Hispanics and 26.6 for whites.
Adverse outcomes after labor and delivery (such as internal bleeding and hysterectomy) are significantly higher among women of color – including Black women – compared to white women, according to a study published in JAMA in June.
Seals Allers says Black women are often told their increased risk can be blamed on factors within their own control, such as "not getting prenatal care, having high blood pressure, and having diabetes."
"White women have these diseases too," she notes, "yet these women can still survive childbirth at rates that we are not able to."
Irth launched in March 2021 and already has some 10,000 reviews from 46 states. Users can search and review physicians and hospitals by name or city. The organization also has pilot partnerships with several hospitals. The Irth team works with hospital staff to establish a goal number of reviews to be collected. They share their findings, and work with the hospital on strategies to improve patient experiences.
NPR contributor Andrea Muraskin spoke with Seals Allers about the need for better patient feedback for people of color who are giving birth, and her aspirations for the project's future.
This interview has been edited for length and clarity.
Andrea Muraskin: How did Irth get started?
Kimberly Seals Allers: Irth began as a mother and son project. As a journalist by trade, I have a passion for stories. My original idea was around how do I put all these stories together? Like what is the story bank for these maternal stories that I was hearing, and also many of the deaths and near deaths that I was hearing about?
And so as I iterated on this, I was like, maybe this could be an app. When I had this idea, my son was probably 12 at the time. He was going to these coding camps every summer. We started going to app development classes together at NYU. And Michael, my son, created our first wireframes that I used. We would go to pitch competitions and hackathons and he would come with me and we'd do our thing. And we had a pitch.
And then I was invited to speak at an MIT hackathon. And at that hackathon that weekend, those engineers turned my son's wireframes into a mobile prototype, and I was able to use that to start raising funds, getting grants to advance the work.
Muraskin: How does the Irth review process work?
Seals Allers: All of our reviews are read by a panel of volunteers. They have to be checked for quality before they're released into the searchable database. All the reviews are anonymized, and we also have certain safety features. So if we don't have at least three reviews [for a given hospital or doctor], we won't show any. Nobody stands alone in Irth.
Muraskin: Now that you've been running for about two years and collecting data, are there any patterns that you've been able to identify?
Seals Allers: We're seeing the number one negative experience being reported in Irth is "My requests for help were ignored or refused." Number 2 is "My pain levels were dismissed." Number 3 is "My physical privacy was violated." Number 4: "I was scolded, yelled at or threatened."
[It's] very concerning, the number of particularly Black families who are reporting that people at the hospital are threatening to call Child Protective Services and other authorities on them when they are simply making decisions about their babies and their bodies...
And then number 5 is experiencing comments based on racial stereotypes. I read a review where a mother went to her prenatal appointments with her husband, and she was told that she needed to return with her marriage certificate. We see people making assumptions that people are on social services — not that there's anything wrong with that if you need it — but that shouldn't be the first question or statement out of your mouth, just because you see a Black or brown face.
And those judgments impact care. And this is what we consistently try to recognize and then help the hospital to correct.
Muraskin: Have you noticed differences among health systems, such as public versus private hospitals, or hospitals that are in areas where there are bigger communities of color?
Seals Allers: I can think of two cities in particular where I think that the perception that the safety net hospital where a lot of Black and brown folks go to is of lesser quality. And actually, it's doing good work. So people have an attachment to the hospital that may be in the white suburb, but that's actually where they're getting treated worse.
One community hospital I'm thinking about in Los Angeles, [Martin Luther King Jr. Community Hospital], has a midwifery program and lots of community resources. But because of where it is, it has a bad perception as opposed to someplace like Cedars Sinai — which has had a very high profile black maternal death — which would be perceived as a "better" place.
Muraskin: The film shows you driving down to Temple University Hospital in Philadelphia to set up Irth's first hospital partnership program. Was that an awkward conversation? What are those meetings like?
Seals Allers: It's always an awkward conversation. Many hospitals can acknowledge that they don't have enough patient experience feedback from their own ... surveys. They are not getting high response rates from Black and brown folks. And that's because of the earned distrust that exists between many health systems and communities of color.
And also people don't know where [their review] is going. They don't know if anyone's ever going to see it. Our community members tell us that they're afraid that they're being tracked. If I had a negative experience, are there going to be repercussions? And I have to go back to this facility to take care of myself and my baby.
And so we really try to invite hospitals into an opportunity to get more robust patient experience data, to repair that relation with the community through transparency. There's always hesitancy with hospitals. That's fine. We are a social impact tool. And if we weren't disrupting and making people uncomfortable, then I'm not doing a good enough job.
Muraskin: Once you do have that partnership set up, how does that work?
Seals Allers: Typically in our grant-funded work, it's an 18 month to two-year process. We work with the hospital to figure out what is our target review number.
And then we go into the community [to get reviews]. In Philadelphia, we have local birth workers who are Irth ambassadors. They are our eyes and ears on the ground in all of the pilot cities. And then they help us make sure that we get reviews. Again we do this work at an arm's distance from the hospital, because we know that they don't have the trust and we don't want our community to be confused about who we are and who we represent.
We analyze those reviews and then we try to create a strategic action plan based on what needs to happen.
Muraskin: So reviews are really important, but I'm sure that the hospitals, and you, are also looking at medical outcomes. So what are some medical outcomes that you expect to see improve as a result of this process?
Seals Allers: I'm going to push back a little bit on that because, for us, the experience is the outcome. There's a whole spectrum of harm and trauma that's happening.
For us now to make those connections between wow, we've been working on the patient experience. We've been working on nurses being more responsive, and the hemorrhage rate is going down, we are seeing fewer needs for emergency C-sections when people are actually attended to when they say that they need help. But our key focus is the experience as the outcome. And we think that if we can improve the experience by addressing some of these negative practice behaviors that disproportionately lead to harm, that the medical outcomes will also improve.
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