An App For People Of Color To Rate Their Birthing Experiences

ARIELLE DUHAIME-ROSS: This is Science Friday. I’m Arielle Duhaime-Ross.

For some patients, finding a good doctor can be as simple as looking up a doctor’s degrees and accolades. But for people who are more likely to experience discrimination in a medical setting, perhaps due to their gender, disability, sexual orientation, or race, degrees only tell half the story. So how do you know where to go and who to trust?

One app aims to help Black and Brown parents to be make informed decisions about where they choose to give birth because Black people who give birth are far more likely than their white counterparts to experience mistreatment in a hospital setting, to develop complications, or to die due to childbirth.

Joining me now to talk about the app is my next guest. Kimberly Seals Allers is the executive director of Narrative Nation and the founder of the app IRTH, spelled I-R-T-H.

Kimberly, welcome to Science Friday.

KIMBERLY SEALS ALLERS: Thank you so much for having me.

ARIELLE DUHAIME-ROSS: Thank you so much for coming on the show.

So you launched IRTH in 2021. Where did you get the idea for this app?

KIMBERLY SEALS ALLERS: Well, a lot came from my own personal experience. When I had my first child, I did lots of research, read all the things– read all those media lists about the best place to give birth. I went to a highly-rated hospital by many common measures, and really had a poor experience. I walked out feeling incredibly disrespected, traumatized, unseen.

And I really spent the early part of my motherhood blaming myself– like, what did I do wrong?

And I realized that people are just not being treated the same way even at the same place, and that despite having degrees and being blessed to not be poor, the reality was, at that time in my life, I was not yet married and I was in grad school so I was on student insurance. And so my treatment was as an unwed Black woman with basic insurance.

And it never dawned on me that those things could impact the care that I received. But we know, as you pointed out in your introduction, that this is disproportionately happening and it disproportionately leads to death among Black birthing people.

ARIELLE DUHAIME-ROSS: Right. So you basically developed a tool that could have helped you if you had had access to this before you gave birth?

KIMBERLY SEALS ALLERS: Absolutely. I wish I could have read reviews from other Black women or other folks who were in my same socioeconomic status or had my insurance type or my relationship status. And so we created IRTH particularly for Black and Brown birthing people to find and leave reviews of people just like them. Because this is a better indicator of what type of treatment you are more likely to receive by knowing what other people like you experience at that doctor or hospital.

ARIELLE DUHAIME-ROSS: Absolutely. So I want to get more into this, but before we move on, where did the name for the app come from?

KIMBERLY SEALS ALLERS: Well, IRTH is like the word “birth,” but we drop. The B, for bias. So we’re all about dropping the B out of the birth experience. And so that is the name IRTH, I-R-T-H.

ARIELLE DUHAIME-ROSS: Got it, OK. So if I open the IRTH app, what kind of information would I see?

KIMBERLY SEALS ALLERS: So if you open the IRTH, we have two core functionalities. Which is you can search for reviews. You can search by doctor name, hospital name, zip code, city and state. And you can leave a review. You can leave a review of your prenatal appointments. You can leave a review of your birth experience, your postpartum appointment, and pediatric reviews up to baby’s first birthday.

And not only do we accept reviews from the birthing person, but we accept reviews from fathers and partners. We accept reviews from doulas because we know that they see a lot. We have a special icon in the app so our users can see that a doula has left the review.

And I think what’s most important about not to mention just the front-end functionality, but on the back end, we turn these reviews into data to literally help hospitals improve their care, to provide more respectful and equitable care for Black and Brown birthing people. We’re doing that now with hospitals in eight states. And we’re excited about centering that Black and Brown patient experience as the tool for how hospitals can improve.

ARIELLE DUHAIME-ROSS: So wait. You’re not only helping inform patients, you’re also helping then improve the treatment at various hospitals by partnering with them?

KIMBERLY SEALS ALLERS: Absolutely. This is really the impact model behind what we do at IRTH as a nonprofit instrument. But yeah, hospitals simply are not getting enough patient experience feedback. Data shows that Black and Brown folks are not responding to hospital-administered surveys.

We know that the medical trust gap has been well documented between health systems and communities of color. And so they simply don’t have enough feedback to improve care.

And unfortunately, I speak to far too many hospitals that feel like, oh, because we haven’t had a maternal death in two years, five years, 10 years, that they’re doing great. Not killing us doesn’t mean we had the experience that we deserve.

ARIELLE DUHAIME-ROSS: Right. So let’s talk a about what you’ve learned. What have you noticed with your users and their reviews? Have you noticed any overlap in experience?

KIMBERLY SEALS ALLERS: Absolutely. So right now, the number one negative experience being reported in IRTH– and we have reviews from 46 states– is my pain levels were dismissed. Number two most reported– negative practice behavior as we call it– is my request for help were ignored or refused. The number two negative reported experience in our nationwide database is my request for help were ignored or refused.

Number three is a reporting that I was scolded, yelled at, or threatened. Deeply concerning to see the number of Black families who are being threatened with authorities, CPS, et cetera, when they are making decisions about their babies and their bodies that they’re quite frankly allowed to make.

Next come physical privacy violated. And so we are seeing a trend. And the thing that’s so striking and the reason why IRTH has the potential to be life saving is, when you look at pretty much every Black maternal death story that you’ve read, somebody’s pain levels were dismissed and somebody was asking for help and they were ignored.

So when we see these things in high frequency, we want IRTH to be an early warning detection system, to alert hospitals, hey, some of the practice behaviors that we know disproportionately lead to death are happening in high frequency in your facility. And we have a way to help you through our improvement plan to actually address this, to improve the overall experience, and to save lives.

ARIELLE DUHAIME-ROSS: Wow. So from what I understand, since you launched the app, you’ve gathered reviews from 46 states. You have 20,000 users. Do you have a sense for what kind of impact the app has had on those users? What are you hearing from them?

KIMBERLY SEALS ALLERS: Oh, absolutely. And we highlight these folks in our social media platforms all the time, our amazing users, who are sharing their stories, who are talking about how they did the search.

We have parents coming in for their own children, doing searches to see where they might have a better experience. And so this is a big part of what we believe in, that we can inform and protect each other and that crowdsourced peer reviews are a tool for safety for Black and Brown birthing people.

ARIELLE DUHAIME-ROSS: Kimberly Seals Allers is the executive director of Narrative Nation and the founder of the app IRTH, spelled I-R-T-H.

Kimberly, thank you so much for joining me.

KIMBERLY SEALS ALLERS: Thank you for having me.

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