Kimberly Seals Allers remembers leaving the hospital after giving birth traumatized and confused about why certain decisions were made.
“I said I was breastfeeding, they kept giving my baby formula, against my wishes. Everything was a fight. I spent much of my early days of mothering kind of blaming myself and wondering what I had done wrong, that I didn’t have the experience that I deserved, even having done the research,” said Seals Allers, who later founded Narrative Nation, a tech and media nonprofit that works on infant and maternal health equity.
Despite doing research on the best hospitals with good patient care, she found that her experience didn’t reflect the reviews and research she had read.
“It never dawned on me, what we know now, that people are just not treated the same way in the same place. And that those reviews that I read, which were mostly, New York City, upper East Side, white women, were actually not at all helpful to me, for my circumstances in my life,” Seals Allers said. “That was a very tough lesson to learn.”
So she created an app called Irth for Black birthing families and doulas to give reviews on hospitals and care teams – to serve as guidance for families who are researching to pick a hospital. People are able to leave and read reviews on prenatal care, postpartum appointments and pediatric care.
Hennepin County Medical Center in downtown Minneapolis will soon start using Irth and will work with community members and future patients to use the app. Seals Allers said the app has been implemented in other states including California, Pennsylvania and Michigan, and currently has around 15,000 users with reviews from 46 states.
“(Irth) gives Black and brown birthing people that ability to see how other people like them experience a hospital provider,” Seals Allers said. “How can we make sure that we are seeing reviews and feedback that are really relevant, pertinent, and meaningful, and potentially lifesaving for us?”
Partnering hospitals use the reviews to examine where they need to improve and what changes they need to make. The reviews are not freeform comments. Instead, the app asks specific questions designed to generate data.
“We’re identifying frequencies and patterns that we know disproportionately lead to death. And we’re able to flag facilities, notify them, whether we’re in partnership or not. This is a critical piece of our work. It’s knowing the things that disproportionately lead to adverse outcomes and using Irth as an early warning detection system to flag those,” Seals Allers said. “What we’ve seen is that hospitals are incentivized to improve when they know that we’re on the ground in the area, and that we are actively soliciting feedback from our community — and that those reviews will be shared publicly.”
Seals Allers said the most common complaints on the app are those of people being refused assistance and having their pain levels dismissed.
Those experiences happen in Minnesota, even in hospitals that serve high numbers of patients who are Black, Indigenous or people of color, said Nneka Sederstrom, the chief health equity officer at Hennepin Healthcare, which runs HCMC. Of about 1,900 births at HCMC in 2022, 40% were Hispanic and 39% were Black. Only 12% were white.
“There’s nothing unique about Hennepin (Healthcare) when it comes to outcomes related to Black and brown birthing people. We are a hospital in America that’s functioning with the same systemic racism issues that every hospital in America is functioning with,” Sederstrom said. “Just like everywhere, our patients have had the opportunity to not feel heard, not really be seen to not have their care.”
“We don’t think that that’s acceptable,” she said.
HCMC will work with Irth for four years through funding from the GreenLight Fund Twin Cities, a local nonprofit that wants to reduce maternal health disparities, a concern that was voiced repeatedly during the organization’s community engagement sessions.
“Black maternal health has come up on the list multiple times over the last few years of my work, and it was very clear to me that it was time to do something and work in this space,” said Simone Hardeman-Jones, GreenLight Fund Twin Cities executive director.
Irth also plans to expand to three other hospitals in the area. With the partnering hospitals, like HCMC, a working group will go through the data collected by the app. After giving the hospital time to implement changes, Irth will conduct a smaller sample size review of the hospital again to make sure those changes have been effective.
“Hennepin (Healthcare) can’t fix it all for the state of Minnesota,” Sederstrom said. “I’m hopeful that with the notice that there are going to be three other hospital systems, that we can start changing our outcomes for Black birthing people. As as a Black birthing woman myself, who had a challenging outcome as well, even with all my privilege, it didn’t really matter. It is near and dear to my heart to make sure that we get this change before my daughter becomes one of those Black birthing people.”
The disparities are stark. For example, Black women in the U.S. are more than twice as likely as white women to have a stillbirth, according to 2020 CDC data. They also die of pregnancy-related reasons at rates three times higher than their white counterparts.
Kindra McGee, an advocate for improving maternal health among Black people, was drawn to becoming a doula for Black women after the negative experience she had giving birth. She spoke about Black maternal health at the MinnPost Festival earlier this month about the need for collecting observations of Black patient experiences at hospitals and how it’s impacting health outcomes to inform and make changes in those hospitals.
McGee’s first child was stillborn, which she said was “due to lack of care, and teaching and understanding.”
While much of these disparities are attributed to social determinants of health — the underlying systemic reasons for which certain groups of people experience worse health outcomes — some of it also comes down to patient care. Many of the women McGee works with as a doula experience doctors not taking their pain seriously or discrimination by hospital staff — both things that affect patient experience and health outcomes.
During the MinnPost panel, former state legislator Ruth Richardson and current CEO of Planned Parenthood North Central States said the problem is deeper than an issue of access to health care, referencing Serena Williams who had a near death experience in 2017 after childbirth.
“When we talk about the Black maternal health crisis, so often people are talking about it in terms of poverty, access to housing, access to insurance, but we also have to be real with ourselves. Black women cannot educate our way out of this crisis, we cannot earn our way out of this crisis, we cannot nutrition our way out of this crisis. Because you can control for all the factors, you can control for housing, access to insurance, you can control for socioeconomic factors, and education, mental health status, substance use disorder status, familial status, and Black women are still 3 to 4 times more likely to die in this country,” Richardson said.