How Do You Know If Your Care Provider Is Treating You Fairly?

Adriana: Welcome, Kimberly, I am so delighted to have you here on the show. Why don’t you tell the listeners a little bit about yourself? 

Kimberly: Thank you so much for having me. I’m Kimberly Seals Allers. I am the founder of the Irth app, host of the Birthright podcast and a maternal-infant health strategist. I feel like my, my life and my work is birth, breastfeeding, and motherhood. So this is one of my favorite spaces for conversation.

Adriana: So this new venture that you’re doing, Irth, I thought it was really interesting. I mean, it’s fantastic what you’re doing, because there is definitely a need for transparency and accountability in the perinatal experience, which we haven’t had. And we’ve been hearing for years, how the statistics of our perinatal care are horrible for everybody— but especially dismal, if you’re basically not white, in a heterosexual relationship, and married with economic status, you know, able-bodied, within a certain age range. If you’re outside of that so-called norm, then you get all this bias. So how are you working to change that? 

Kimberly: Well, you know, I think one of the most important things that we are doing to change that is allowing people to see it. I think that, you know, when I created Irth- which is like the word birth, but we dropped the B for bias, so it’s spelled I-R-T-H, folks- um, really with an idea that we could leverage consumer power, that we could drive transparency and accountability by putting our experiences on a public digital platform, and that we could force this industry to pay attention to our experiences by making sure that there was transparency. We know that has been lacking and it’s really concerning to me that in all the areas of QI and metrics like there’s always evaluation, there’s always accountability, but somehow when it comes to this issue of racism and bias- which has been identified as a root cause, one of the many root causes of what’s going on in Black maternal mortality, morbidity- there seems to be none of that. I mean, hospitals have been allowed to do an anti-bias training, tick the box— and the statistics show us that these have not moved the needle in any significant fashion. And there’s quite frankly, no study that shows that anti-bias trainings work, but yet this has been permitted and allowed and accepted, you know, when it comes to something that is, as you said, disproportionately harming and killing Black birthing people. And so, you know, one of the things that we’re all about is transparency. Um, we should be able to see where other people like us are getting good care and where they are not.

Adriana: When you are looking for a care provider- an OB, a midwife, a place to birth- you usually just ask your friends and start asking around. “Who do you know?” And so what I’m understanding is that Irth takes that to sort of the collective level, by making an app out of that where everybody, anybody, can input their information of how their experience is, of what they experience. Correct?

Kimberly: Correct. And I think, you know, it’s not just about knowing a doctor, it’s about seeing whether or not this doctor or hospital has good reviews from other people like you. And so Irth accepts prenatal reviews for your prenatal appoint with your OB-GYN, your birthing hospital experience— you know, asking you detailed questions about the doctor, nurses, and lactation consultants, in that experience. It accepts reviews about your postpartum appointment, as well as pediatric, um, reviews of your pediatric appointments for your baby, up to baby’s first year. And so this is critically important. 

When I had my first birth experience, I did lots of research, right? I thought I was reading all the right parenting blogs at the time and read those media reports with the “best of” lists from my city. I went to a hospital that was very highly-regarded in terms of media lists and in terms of what I was reading on those listservs. But I had a terrible experience, you know; I left feeling traumatized and disrespected and really was shocked that I was not having the experience that I had read about. Right? I, my baby, was given formula when I said I was breastfeeding. I fought to have my baby with me, and it was just all these things that I had read, didn’t happen for me. And in retrospect, the reality was at that time in my life, I was not yet married and I was in grad school and I was on student insurance. And I was treated like an unwed Black woman with basic insurance, like that was my experience. And it dawned on me, oh, people are not being treated the same way at the same place, and who you are and your circumstances in life could actually impact the care you receive.

And so, for me, reading those reviews of what turned out to be, you know, Upper East Side middle-class white women was absolutely not helpful to me as a single Black mom. And so this is the, you know, the challenge Irth seeks to solve: by saying you can find reviews from people like you to see whether other people feel that who they are (whether that is their race, class, gender identification, sexual orientation, income, et cetera) has impacted their care. And then on the backend, we use those reviews to actually push for hospital and health systems to change by listening to that information and turning it into actionable strategies for them.

Adriana: And a crucial point of this is having lots of data points, right? How long have you been collecting data for? 

Kimberly: Well, we’ve been collecting data pre-app. Irth is a project of my nonprofit, um, and we were grant funded to kind of “pre-test” this review process, our survey questions, et cetera, et cetera. So that went on for about 18 months. And that was before we even put the app out there. Then, we’ve been in the app stores coming up on one year now; I will be celebrating our first birthday at the 1st of March! And so this idea of us kind of spending a lot of time building with community was really, really important to my design process. 

But to your point, it only works with our collective power because quite frankly, you know, these hospitals and providers don’t listen until we have numbers, right? Because it is very easy for them to dismiss one or two experiences— even the most glaring and dreadful headlines that we’ve seen in the media reports.

But what if we have hundreds? What if we have thousands? What will they say then? Right? What will they say then? And we’re already seeing that power in our ability to get them to listen, which is sad, but true. And then I think on the other side of that, it’s our unique recognition that hospitals are businesses.

Yes, they are supposed to care, but at the end of the day, they are businesses. We live in a commercialized health system and it has many, many failures, but we need to use that to our advantage by thinking about their bottom line, and that includes their reputational management, that includes understanding what a cost-centered prenatal care is, and respecting mothers and parents as key decision makers for future healthcare decisions. And so that’s where we also like to speak to them and meet them, as we try to push all the levers necessary to move this issue. 

Adriana: And where are you folks at in getting to those numbers that are gonna create a tipping point for institutions to start really listening? 

Kimberly: Well, that depends on geography. You know, obviously we have more reviews in places where there are deeper concentrations of Black and brown folks. So Irth- let me pull back- Irth has reviews from 48 states plus Hawaii. So we have reviews from all over. We’re so grateful for that! But really, we work best with geographic density.

So for example, you know, prior to launching, we were grant funded to work in five key cities, New York City, Detroit, Sacramento, Washington, D.C., and New Orleans. And so we, you know, have more reviews from those cities because we worked there, kind of pre-launch but you know, we look at other kinds of centers where we know there are high concentrations: Atlanta, areas of cities in Texas, L.A. And so this is where we focus our attention and this is where we ask folks, you know, mostly to help, because we know that in these pockets is where disparities are more severe. And then, we are hoping to be able to move out to a more rural strategy, knowing the challenges that exist there.

But right now, we need the geographic density that primarily exists in cities, for us to start pushing with the health systems there.

Adriana: In terms of the, of the data that’s coming in, of the reviews of what people are sharing with you, what are the biggest things that are standing out? What are you seeing in terms of bias? 

Kimberly: It’s been really interesting, and we have some really direct screens, where we ask specifically about negative practice behaviors. 

Right now, the number one negative experience being reported in Irth is requests for help were refused or ignored. Number two is being scolded, yelled at, or threatened. Number three is pain levels being dismissed. And number four is physical privacy violated, right?

And we’re seeing these at rates of up to 40% among those who identify as Black or African-American. So, it’s deeply distressing… It’s deeply distressing. 

And I think, one of the things as deeply concerning is the ways that, in Black maternal health, people have felt like survival is a great experience, right? When we see too many Irth reviews where people are saying- when we ask “What’s the best thing that happened to you?”- they’re like, “My baby’s alive. I’m alive.” That should not be the best thing of a birth experience. And I think this is the danger of the narrative that’s been in Black maternal health— the media focus on death, the hospital focused on death, that people feel like if they have survived, they have won, and that is not a five-star experience. And you know, that is part of the reason why I started Birthright, to actually tell positive Black birth stories as a counter-narrative to this “doom and gloom” that is actually affecting people’s expectations. It’s affecting their social stress during their pregnancy. And we see it’s impacting their ability to really rate and review a birth experience. 

Adriana: Well, and I think it’s crucial to have that shift into how people connect with the experience of birth and, and being pregnant and being postpartum, because there are so many horror stories, right? But we also need to counterbalance with those beautiful stories. And I think, it’s about giving power back to the people and power in their voices and in their actions, and not saying, “Oh, thank goodness you saved me, saved my baby.” When in fact, there is so much research showing that sometimes the interventions cause the outcome that required the quote-unquote “saving”. 

Kimberly: Exactly, exactly. It was actually preventable and became a near-death situation because of an unnecessary medical intervention. I want to be clear, like this idea of death being the analysis point and, and the goal, not dying being the goal, is a standard that the hospitals have set up, right?

Like they do maternal mortality review boards. Thank you very much. But for me, death should not be the trigger for analysis! Why, why does someone have to have died before you analyze what’s going on? And what’s going right, right? It’s like, this is backwards. And my experience- you know, and you know, you’ve seen this too- there’s a whole spectrum of trauma and pain that people are carrying, myself included, for years, even when we don’t die. And that needs to be addressed too. It is not just the death.

Adriana: Well, and focusing on the death also allows the conversation to be steered away from the near-misses and the trauma and the disrespect and the being ignored and the being threatened and the violations to your physical body— all these things that from, as you were naming those categories, immediately I went to the Listening to Mothers survey and the work that has been done by the Birth Place Lab regarding this mistreatment during birth… Did you guys work in connection or in collaboration, or did you use some of those data categories to inform the work of Irth? 

Kimberly: Absolutely. We certainly use some of their data, um, certainly some of their processes. And so, you know, building on the great work that’s being done to better understand this. And I think the, more to your point, that we can get away from only counting clinical measures. Right? And so it’s not just what happened, but how it happened, that matters.

And what we found in Irth reviews is that many times people can accept that they had a C-section, even that wasn’t their goal. We see so many reviews from mamas and parents who ended up in the NICU, but still say something nice about the staff, still say something positive about how they were treated, how their questions were answered, were their own opinions and desires respected— these are the things that we need to capture and address, because they contribute not just to deaths, but the whole spectrum of birth trauma that is being carried by far too many Black and brown birthing people. And you know, at the minute we can value that too, then we have an opportunity to really transform the birth experience.

Adriana: Well, and I so appreciate the work you’re doing, the work that the Birth Place Lab is doing, in figuring out how to quantify these more intangible experiences, because then, then you’re speaking in the hospital’s language, right? Then you’re speaking in a way that they can figure out what to do with it and really create processes to minimize that. 

Kimberly: And in our hospital pilots, we literally work with them, right? Because we don’t really want to give them the information and leave it to them to figure out what to do. They really haven’t had an impressive track record on that, in my opinion. So we are really developing this,  this translational science around, how do we take this nuanced patient experience data and what does that mean for a hospital, what they have to do? And how do we embed that into patient safety and QI— you know, hospitals have more metrics than any other, any other institution! It boggles my mind, but I’m going to say “none” but I will caveat myself and say very few of them have ever tried to center the lived experience of Black and brown birthing people when they are assessing their maternity services. And that is ultimately what we also want to solve is: you all need a new system. Right? And it’s not just putting the burden on birthing people. It’s not just asking, you know, lionizing doulas and expecting them to save the day.

Your systems on the backend are equally broken and those need an equity infusion as well. And we can do that by having a more nuanced understanding of the Black patient experience and then layering that into what you’re already doing, you know? And so that’s really the backend work that we do with our hospitals and hospital pilots.

Adriana: So how are the institutions, the hospitals, the administrators receiving the information you are presenting? Are… How are they working with you? How’s that going? 

Kimberly: Well, let’s see. What do you think? You know, I mean, there are two kind of, you know, I, I would say two kind of camps. There are those who are aware that they are not receiving enough Black patient data. What we’ve seen: responses to HCAHPS are declining, particularly around Black and brown folks, you know, this general distrust of hospital institutions. 

Adriana: What are HCAHPS? 

Kimberly: It’s the one the federal government requires. It’s [sic] H-C-A-P-H-S, and it is a hospital-admitted, federally-required survey that is sent out. It does not really cover maternity, in detail, it does not really ask questions that try to capture the nuances of race and ethnicity as being critical to your experience, but hospitals have to send them out and they have to report their response rates and they have been declining. And what we found is, you know, from the community perspective, responding to a survey from a hospital when you don’t know where it’s going, you have no guarantee that the hospital is going to do anything, and it’s like, why? You know, especially if you just had a negative experience, you know, you really don’t feel like you have any recourse. And so, we find from this idea of your review as actually helpful to your community, is something that hospitals can’t provide right. And so we see the interest in our data because they just don’t have it, but we see the resistance to the transparency of it. And so if I was willing to keep Irth reviews private and share them only with the hospital, we’d have a thousand hospitals signed up, you know, I’m sure of it! But because we refuse to keep our community in the dark and we say that we are leading a movement for transparency and accountability, we face a lot of resistance. 

And let me tell you if I had a dollar for every time hospitals are simply dumbfounded that we already have information on them, we didn’t ask their permission and they can’t own the data… I mean, they are really stumped! But they’ve been centered for far too long in this process. And let me tell you, even birth equity-related initiatives have come to Irth, asked us to de-identify hospitals, which we won’t do. Like even those who are supposedly working in this issue, literally I’m on calls and they’re like, “Well, what will the hospitals think?” Do hospitals have feelings?! So we have humanized the hospitals and dehumanized the literal, actual Black birthing people. It is mind-blowing! 

Adriana: Well, and it’s a flip of vulnerability, right? Hospitals- and we’re going to institutionalize it and not humanize them- but, you know, as an entity, they have all these people that come in at their most vulnerable time and ask them to properly take care of them. And this is a situation where a bit of the tables are flipped. They are feeling now vulnerable and I find that that’s an interesting flip.

Kimberly: It is, and that’s what racism is ultimately about: power. And that’s why I think technology is such a powerful tool for us to really bring to our birth equity work, because it has the potential to flip the power dynamics. It is something that I am deeply committed to, because historically- particularly for Black women- our relationship to the medical system has always been about power, right?

When they used us as enslaved women for their subjects for experimentation, we had no power, had no agency. And what I’m excited about with Irth is our ability to leverage technology, to help- not flip, I’m not that optimistic in my lifetime- but to even help address and somehow begin to equalize the power imbalances, which are inherent in racism, which are inherent in racist institutions and systems. And if we don’t recalibrate the power dynamics with the hospital, in my opinion, we just won’t get there.

Adriana: And I think what’s really exciting is that, when people are trying to speak up and gain power and have their voices heard, when there’s a power dynamic imbalance, the fear is retaliation… but you’ve set up a structure where that can’t happen.

Kimberly: That’s right. It is completely anonymous! We anonymize all reviews, once we verify your identity. The lawyers for Irth work really, really hard to make sure that our reviews are protected, such that I can’t really know who you are, so the hospital can’t sue me to make me tell.

Adriana: Is Irth for everybody, or are you only looking to get reviews from Black and Hispanic folks?

Kimberly: So Irth is for all marginalized groups, right? Essentially, primarily at this point, we have asked white women to allow us to create a safe space for Black and brown folks, because we know that they have it worst and we really want to create a safe space for them. We see Irth tools as being critical to other marginalized groups, including, as you mentioned, the LBGTQ+ community, other differently-abled folks, trans folks, et cetera, et cetera. Right? But my vision for Irth is really about a time when white women are using Irth, too— that white women are taking out the Irth app and saying to their doctor, “I saw your Irth reviews. It’s not good for Black and brown women, and I don’t want to come to you either.” Right?

And so the truth of the matter is that Irth’s true power exists when our white allies begin to use the app, speak about and let the Irth app reviews become part of their decision-making process too. So that time is coming soon! Because it’s important to know a place that’s just crappy to everybody, right? And that, that exists as well.

And… but we really needed to center Black and brown folks first, to make sure that we have built something that is ultimately safe for them before we invite others in, in, in, in, in a full way. 

Adriana: And I’m very excited about also the partnerships you’re doing with doulas, because I have seen firsthand how the same providers in the same hospital treat patients differently based on their race.  

Kimberly: Yeah. And doulas, doulas share that and their reviews. Please leave your doula review, um, because it is really powerful! In fact, we have a special icon in the app that shows up on doula reviews, so our users can find them easily, because we really want to lift that up. But the doula reviews, when they say, “I have had white clients, and this is what happens to my Black clients,” I mean, that’s powerful. There’s been a lot of talk about the value of doula to the individual birthing person, this is true… but doulas are a source of data that needs to be respected. And the doula’s perspective must be included in this new idea of evidence-based that I am pushing for because that evidence has often not included Black and brown folks. So we need to redefine whose evidence is, is being centered as we rebuild and transform our maternity system.

Adriana: So Irth is gonna be a year old…

Kimberly: Yes! 

Adriana: …starting to walk, is a little toddler. What are the next steps for Irth?

Kimberly: Yeah, so much, so much lies ahead! I mean, one: we’re working on always improving our product. I remind folks that we are a tech nonprofit, so it’s not like we get, you know, $5 million to build [sic] a amazing app. So we’ve had a different development process and now that we’ve gotten some traction— you know, like you said, we’re starting to walk and people have seen where we can do, they think we cute, they think we’re cute! So now more people are wanting to give our baby some support. One of my biggest challenges is that people are like, “Man, this is a lot of questions!” It takes about 15 minutes to complete the survey. But we ask people to understand that we’re asking you for this 15-minute commitment for the sake of a greater goal, right? And if we can do it for Geico, I think we got to get our messaging together that, you know, 15 minutes of your time can help make Black births safer. And so that’s what we’re going to be doing, doing a better job at explaining why we asked the questions.

I wish I could create a five-question survey that hospitals will listen to. It, it, it can’t, it won’t happen. Um, and our goal, is to capture this deeper, more nuanced data to improve care. And so really helping people understand our end game, and their connection to that is, is a big part of what we’re going to be doing going forward.

And this year we’re spending a lot of time really trying to expand our hospital pilots. So we have one in Detroit. We’re about to bring on Philadelphia. We’re working on New York City, potentially upstate New York, where you live. L.A. So our goal is to really spend this next kind of year really expanding our hospital pilots, testing our data, seeing what it could do. It’s like, okay, we started walking… now let’s, let’s see if we can run. Because for me that is Irth’s true mission, to push for the systemic change. And so we need to keep learning what earth can do on the backend around that.

Adriana: Kimberly, thank you so, so much for being on the show today. It’s been a delight. 

Kimberly: Thank you for having me. I appreciate this platform. And thank you for all the great work you’re doing to educate and empower parents on their birth journey.

CITATION: 

Lozada, Adriana, host. “How Do You Know If Your Care Provider Is Treating Your Fairly?” Birthful, Adriana Lozada, February 16, 2022. Birthful.com.