Bias and racism in the health care system are about to come to an end thanks to an app built to change the industry as we know it. IRTH (as in Birth, but without the B for bias), is a “Yelp-like” application created with the intention to store in one place reviews and ratings of hospitals and physicians, based on how they treat their patients.
IRTH, available in Fall 2020, will filter reviews from mothers based on their racial, ethnicity, sexual orientation, identity, and experience. BELatina spoke with Kimberly Seals Allers, the founder of this revolutionary and innovative app on how it works in favor of Black and Latina mothers, how they can share their negative or positive feedback as well as how their data will be protected.
Tell us about IRTH and how this idea came to your mind.
The idea came to me from my own birth experience. I was finishing up grad school in New York at Columbia, and I asked many of my white girlfriends who are mothers about where to deliver and to give me recommendations. I checked all these lists that are often published, and I went to this place that was very well reviewed — and I left traumatized.
I had a C section — which I still can’t fully explain and was never fully explained to me. I fought to have my baby with me, I had clearly said I was breastfeeding and it was written on the card and they isolated me and gave my baby formula without my wishes and they were very dismissive when I was expressing myself. Everything was just crazy, and it got to the point where my girlfriend said to me later: “Wow, were you at the same place? Right?” But the fact of the matter is, at that time in my life, I was not yet married. And because I was at Columbia, I was on student insurance. So I was an unwed Black woman with basic insurance. And that’s how I was treated.
Now what we know is that people are not getting treated the same way, even at the same place. And although these women were in one way my peers and we had worked together or we went to undergrad, they were not my favorites in terms of my circumstances, so who you are at that moment in time matters, unfortunately. It would have been much better for me to have gotten a review from someone more in my life circumstances.
That experience always stayed with me and then as I began to get into maternal health work working in communities on the ground, in six cities with the Kellogg Foundation, I kept hearing the same stories from Black and Latina women over and over again about what was happening in their care. We know the reports about Black and brown women being disproportionately harmed out of New York City, where the Black maternal mortality rate is 12 times higher than white women, and with Latinas it’s about 10 [times higher]. So it’s a problem.
Unfortunately, we’ve been relying on the hospitals on their own to fix it. The hospitals have been allowed to basically do a trend. In 60 minutes, maybe 90 minutes, sometimes two to three hours, but they do this cultural competency, anti-bias — whatever the current premium name is for it — and they check the box and that is it. They never are going back to see whether that training is actually impacting the patient experience and there is no public accountability. So this is why IRTH is so important because it does two things. On the front end, it becomes a tool to help Black and brown women when they choose providers that women actually like.
This allows us to shift this narrative that Black and brown [women] are not the victims of maternal mortality. We can use our collective power as consumers, as women, to say “I’m going to check IRTH first, and I’m going to use my consumer power to let these doctors know that I’m not going to use a provider, if at all possible, that does not have good IRTH reviews.” So that’s the power of the front end.
On the back end, what we’re really looking to do with these collective experiences is to really use it and to turn it into quantitative data that we can use as a tool for changing, and so now we need to go to that hospital and say: “Hey, listen to the reports! Mothers and babies are having this experience and we need to do better.”
Now we hear the stories from Serena Williams and the story of our sister Amber Rose Isaac, a Latina who died in New York City in the Bronx, right after childbirth during the COVID-19 pandemic, a few weeks ago. So we know that these stories are out there, but how do we put all of those stories together and use them as a tool for change?
The fact that so many Black women and Latinas are dying, it is unacceptable. We’re not asking anymore! We’ve got to create our own platform where we can let each other know where we are receiving good care or not. We will share that data with you and push you to change. However, we will be using our consumer power to protect each other, that’s critically important to me. IRTH is also a tool for allyship, and this is really important at this moment, because white women say to me, as they should, “If the doctors are not treating Black and brown women well, I don’t want to go again.” So we need white women to share their experiences as well in the app. The willpower is that white women use themselves for decision making and that all women get to come together to use our collective consumer power in service.
How does IRTH work?
When you go through the process, it asks you specific questions about what happened to you. It is not just a freeform [review]. You are going to be able to explain your traumatizing experience if it was a lack of eye contact, or if you asked for diagnostics and didn’t come back. Also, if your pain levels were dismissed. In fact, about 25 experiences that we’ve been adding, based on what women tell us happens, are very sad, but our goal is to stop racism and bias and to actually provide more detailed information and make [the health care system] develop solutions that are based on the lived experience. Their solutions right now are based on some intellectual social science, and it’s not based on what’s actually happening to women in the hospital. So we want that to be the foundation of the “research.” We want that to be the foundation of the “training.” So we really want to decode these experiences and give this data to the hospitals and then down the line is all of the solutions that help them address it.
Let’s talk about all this information that we’re going to be sharing on IRTH. Can I be an anonymous user? Will IRTH also take the necessary steps to protect my data?
Like many other services, you will be able to create a username, a public-facing name. You will have to create an account for us but you don’t have to use your real name. We have the mechanisms and we are working with a lawyer who is making sure that everyone is protected. Hospitals are not allowed to create accounts because we want to make sure that it is by us.
You raised half a million in funding destined to collect the reviews for Black and Latina mothers. Can you tell us a little bit about it, and can we contribute and donate to IRTH?
We raised over $500,000 dollars. We got funded by the California Health Care Foundation and other foundations. One of the things we’ve already learned is that even technology can be biased. I wanted to make sure that we build on the community. It was really important to me and anyone on my team that we create a new way of technology and put development back into the community. When we go into the community, we hire and pay community residents. I believe very strongly that the community should survey itself and that this is a way that we actually support the idea that communities are solution creators.
We were funded to go to find cities and collect reviews, talk to people, and build out the app with community involvement. That was really important. Of course, that has changed because of the coronavirus; literally, we were about to launch in Sacramento before the pandemic hit, so now we are shifting to online working, but we are still trying to stay true to that process by making sure that we are getting input. We did complete New Orleans, we have some really exciting data from there that I hope to share soon.
To donate please visit here.
The app will be launched in the fall, but can you please tell us the exact date and how can we download it?
You’re going to be able to download it on September 15. We are trying to move that forward, but right now we are looking at September and we are developing an Android and iOS version. So we expect it to be in both stores and you will be able to download it on your phone. We will also have a responsive website for those who want a different experience but it will be mostly Android and iOS.
Would you like to send a message to not only the Black and Latinx community but also to white folks to be part of this initiative?
If you want us to help build an anti-racist society, which includes the anti-racist system we need white women to join us so we can all work together to insert the Black and Latinas who have been disproportionately affected by this. The vision is for this app to really be a tool for all women.
Right now we’re focused on maternal and infant care but I know that this platform and this way of looking at it could apply to many other areas of women’s health. Once you’re looking for perhaps a gland cancer specialist or a woman dealing with fibroids or other areas of women’s health and there exists a racial disparity in mortality rates, this type of peer-reviewed data can benefit them too.