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This “UX nerd” is running hackathons to tackle the POC maternal mortality crisis

To address the African-American maternal health crisis requires community-generated, black-led solutions, says Whitney Robinson.

This “UX nerd” is running hackathons to tackle the POC maternal mortality crisis
Whitney Robinson [Photo: courtesy of The Renée]

The U.S. has the highest maternal death rate of any developed country and it continues to climb. Black mothers are three to four times more likely to die from pregnancy-related complications.

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A spike in media coverage over the last couple of years has seen this crisis hit the national agenda, and 2020 presidential candidates Kamala Harris and Elizabeth Warren both recently announced different approaches to tackling this issue.

It’s critical for community-generated, black-led solutions to be part of those efforts, says Whitney Robinson, a product manager and self-described “UX nerd,” as well as groups like Black Mamas Matter Alliance (BMMA), a prominent organization that focuses on maternal health issues.

Her first experience with health tech was through the MacArthur Foundation as a 3D designer creating avatars for crisis intervention simulations for Duke University School of Medicine. But after being blindsided by her own pregnancy loss, she started to think about how tech could play a role in changing the narrative around maternal mortality for people of color.

The loss came as a devastating shock to Robinson, who initially “had all the checkmarks of a healthy pregnancy.”

“I didn’t even realize I was part of a statistic then…but I remember in delivering her that I immediately I felt shame. It completely caught me off guard and I went into a very dark place,” said Robinson.

“I think there are lots of stories of people like this, out of some very traumatic and hard place. You have a choice either stay there or use that to catapult you into something else.”

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[Photo: courtesy of The Renée]
In 2018, during her second pregnancy (which resulted in the healthy birth of her son), Robinson put an informal survey on Facebook asking women about their experiences with pregnancy loss—30 women responded.

“Everyone was on a scale from zero to five, with five being excellent, zero being I’m not functioning well. Everyone, besides one person, was between a zero and two. The main reason was a lack of support, said Robinson.

The results demonstrated to Robinson that there were still very few resources available for women since her own miscarriage seven years ago.

“I was pretty determined at that moment, that I need to work on this,” said Robinson.

Robinson began by spending months consulting with a diverse population, from maternal health academics to indigenous populations to incarcerated pregnant women.

More like ‘jam sessions’ than hackathons

This led to the launch of The Renée, (Renée means rebirth) a series of hackathons held across the country. Except these don’t look like any hackathons that you would normally see in Silicon Valley. Robinson prefers to call them “jam sessions,” where women of color from all walks of life can come together, share their experiences, and “hack their pregnancies” in a space that is “joyful and inviting.” All of the rich data obtained from the sessions will eventually inform a tech resource for pregnant women.

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“I thought, I can go off my own experiences or make a blanket statement on what women need, based off what happened to me. Or could be a little more wise, a little more empathetic, and I can allow women to solve these problems,” said Robinson.

Robinson’s approach involves a level of deep community engagement that is typically neglected in the tech world. The “femtech” market is estimated to be worth $50 billion by 2025, but tech continues to ignore women’s needs. Apple infamously neglected to include a period tracker when it first launched HealthKit in 2014 and despite repeated customer requests, Fitbit doesn’t have a pregnancy mode. Period tracking apps don’t allow women to record irregular cycle lengths or acknowledge same sex relationships when recording sexual activity.

Monica McLemore is a BMMA advisory committee member and assistant professor in the family health nursing department at the University of California. She is also frustrated by the lack of diversity reflected in tech resources.

“What bothers me about technology as you currently use it, is it has been developed with a with a very narrow window of users. What ends up happening is you get machine learning and different types of apps that have really been normalized on a false pretense.”

“The reason we need makers of color and particularly women of color, is because technology was never built from our unique perspective. It was never built to actually include things like our lived experience.”

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‘What does it look like to be a good patient?’

Each session is “lightly facilitated” by Robinson and includes five to seven women. The group will identify the “pain points” from their experiences and possible solutions.  A researcher at Google advised Robinson to keep the group small, in order to allow a deeper discussion and equal contributions from participants.

Robinson has completed her first session in Durham, NC and will be hosting sessions in Baltimore and New York in the coming months. She aims to host 12 sessions in the next year.

The Durham session included a doctor, a writer, a waitress, a doula, a midwife, and a chef, all previously strangers, but all bound by different experiences of pregnancy. One participant shared the story of her recent miscarriage, while another talked about an ectopic pregnancy that led to the discovery of cervical cancer.

The concept of trying to be “a good patient” and “what does it look like to be a good patient?” came up several times in discussion, as did “poor relationships” with or “a lack of empathy” from medical providers.

An insight that surprised Robinson was the importance of prayer and positive affirmations throughout the pregnancy.  Yet, this is exactly why she is running the sessions, and she hopes she will be continually surprised as she visits different parts of the country.

“As a product manager, the biggest thing is knowing who you are building this for…you have to be constantly learning, constantly inviting the uninvited to the table and allowing them to run the show,” said Robinson.

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Robinson is unsure what her final product will look like but hopes to partner with an educational institution. She is also leaning toward a “gamified experience that gives women the tools they need as they progress through pregnancy” but is always “open to being wrong” and pivoting in pursuit of a more inclusive product.

McLemore emphasizes that this is the most important aspect of the The Renée.

“She’s not asking one person to represent an entire diaspora. She’s filling in as many viewpoints and perspectives, so that when her product is actually rolled out to a much wider audience, it will be reflected,” said McLemore.

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