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<h1>Protecting Black Pregnant People’s Health—and Data</h1>

<p>In the United States, health care for Black pregnant people is often understood through the lens of crisis. Indeed, Black women are dying from preventable pregnancy-related complications at <a href="https://www.cdc.gov/nchs/data/hestat/maternal-mortality/2021/maternal-mortality-rates-2021.htm" target="_blank" rel="noreferrer noopener">three to four times the rate</a> of white women. At the same time, the increasing <a href="https://thereader.mitpress.mit.edu/tech-companies-are-profiling-us-from-before-birth/" target="_blank" rel="noreferrer noopener">datafication of pregnancy care</a>—intended to minimize implicit biases and increase patient engagement—also creates challenges for birth workers seeking to provide holistic care to marginalized people. Instead of streamlining care, intensive data collection introduces administrative burdens, interoperability failures, and the potential for privacy breaches.  </p>



<p>Yet, when we focus our attention on the data that describes Black maternal mortality, we run the risk of obscuring what many birth workers are doing every day to reduce these disparities and deliver tailored care. </p>



<p>Broadly speaking, birth workers are using data collection tools that fail to meet privacy standards, struggle to perform vital functions, and put patients and workers at risk of colliding with carceral systems. But that snapshot does not tell the full story. “<a href="https://datasociety.net/library/establishing-vigilant-care/" target="_blank" rel="noreferrer noopener">Establishing Vigilant Care: Data Infrastructures and the Black Birthing Experience</a>,” a report I authored, offers a birth-worker-led analysis of how data collection impacts Black patients.</p>



<p>I argue that doulas, midwives, and physicians who center Black patients’ experiences in their approach to care are uniquely attentive to these harms, and use their knowledge about how data collection is implicated in <a href="https://doi.org/10.1080/01459740.2018.1549389" target="_blank" rel="noreferrer noopener">obstetric racism</a> to protect themselves and their patients. In doing so, birth workers’ vigilant practice of adapting their data collection strategies is offering an effective model for protecting pregnant patients’ reproductive rights.&nbsp;</p>



<p>Across the board, pregnancy and childbirth involve <a href="https://datasociety.net/library/establishing-vigilant-care/" target="_blank" rel="noreferrer noopener">comprehensive data collection</a>. Providers gather patient data through conversations and medical instruments during clinical encounters and enter it into electronic health records. Doulas and midwives collect data about patients’ holistic needs through methods that range from handwritten notes to digital records. Insurance programs, most notably Medicaid, gather demographic and population health information. At home, patients can collect their own data using <a href="https://www.npr.org/2022/05/10/1097482967/roe-v-wade-supreme-court-abortion-period-apps" target="_blank" rel="noreferrer noopener">femtech apps and devices</a>.</p>



<p>For Black pregnant patients, data collection carries gendered and racialized consequences. Data gathered during clinical encounters and on personal devices can be made available to government agencies and law enforcement in ways that criminalize and discipline Black birthing people—leading to imprisonment, child separation, and other forms of surveillance.</p>



<p>In the wake of the<em> </em><a href="https://www.yesmagazine.org/opinion/2021/12/03/supreme-court-abortion-dobbs-decision" target="_blank" rel="noreferrer noopener">Supreme Court’s <em>Dobbs</em> decision</a>, these risks are even greater, as patients and providers fear prosecution for receiving or delivering abortion care. In this environment, efforts to identify and prevent entanglements with carceral systems are even more vital.</p>



<p>Black-centered birth workers provide care designed to address the specific needs of Black birthing people.<strong> </strong>Rooted in Black American traditions connected to the African diaspora, these experts remain vigilant to obstetric racism and engage in protective strategies. They evade carceral data collection systems by teaching their clients how to navigate clinical encounters, compromise with faulty data collection systems and engineer work-arounds to ensure they can still provide holistic care, and refuse to collect information that can harm themselves or their patients.</p>



<p>Beyond the tech itself, policy changes are shaping how birth workers approach data infrastructures. In response to the Black maternal health crisis, many advocates have called for Medicaid to register doulas as covered providers. <a href="https://datasociety.net/library/establishing-vigilant-care/" target="_blank" rel="noreferrer noopener">The doulas I spoke with</a> expressed trepidation about these efforts, explaining that while they welcome the ability to provide more affordable and accessible services to their clients, the process to become an enrolled provider through Medicaid puts a strain on their practice.&nbsp;</p>



<p>Doulas typically use low-tech methods to gather data about their patients, opting to use handwritten notes or other forms of basic data collection. In contrast, Medicaid requires providers to meticulously document their care and interface with an online portal that doulas called “a complete utter nightmare.” This clash between traditionally low-tech doula care and the high-tech demands of Medicaid speaks to the larger disconnect between data-intensive approaches to care and the need to protect and better care for Black pregnant patients.</p>



<p>As they manage and deliver care to Black patients, birth workers are contending with the challenges and dangers posed by these different forms of data collection. “This is the future that our current data-driven understanding of the Black maternal health crisis gives to Black birthing people—a <a href="https://press.uchicago.edu/ucp/books/book/chicago/D/bo20836025.html" target="_blank" rel="noreferrer noopener">sociotechnical imaginary</a> defined by death, dying, violence, incarceration, and mistreatment,” I write in the report. “This is also the future that birth workers and other advocates for Black birthing people are tirelessly working to prevent.”</p>



<p>Rather than a simple case demonstrating the value of Black physicians treating Black patients, when Black-centered birth workers care for both Black patients’ bodies and their data, all pregnant patients benefit. If we hope to improve care for the most vulnerable, preserving the agency these birth workers demonstrate is vital. Rather than turning toward <a href="https://www.politico.com/sponsored/2024/04/advancing-data-equity-to-improve-maternal-health/" target="_blank" rel="noreferrer noopener">increased</a> or <a href="https://www.healthcareitnews.com/news/how-epic-using-ai-change-way-ehrs-work" target="_blank" rel="noreferrer noopener">automated</a> data collection, we should follow Black-centered birth workers’ lead as they identify and fight against pressing risks to Black pregnant patients’ right to joyful pregnancy, data privacy, and freedom of choice. </p>

<p>This article originally appeared in <a href="https://www.yesmagazine.org">Yes! Magazine</a> at <a href="https://www.yesmagazine.org/opinion/2024/08/27/black-data-birth-privacy">https://www.yesmagazine.org/opinion/2024/08/27/black-data-birth-privacy</a>.</p><link href="https://www.yesmagazine.org/opinion/2024/08/27/black-data-birth-privacy" rel="canonical"/><p>Yes! Magazine is a nonprofit, independent media organization dedicated to telling stories of ... . Learn more at <a href="https://www.yesmagazine.org">Yes! Magazine</a></p><img id="republication-tracker-tool-source" src="https://www.yesmagazine.org/?republication-pixel=true&post=120657&ga4=G-74QJNNY44Z" style="width:1px;height:1px;">

Protecting Black Pregnant People’s Health—and Data

In the United States, health care for Black pregnant people is often understood through the lens of crisis. Indeed, Black women are dying from preventable pregnancy-related complications at three to four times the rate of white women. At the same time, the increasing datafication of pregnancy care—intended to minimize implicit biases and increase patient engagement—also creates challenges for birth workers seeking to provide holistic care to marginalized people. Instead of streamlining care, intensive data collection introduces administrative burdens, interoperability failures, and the potential for privacy breaches.

Yet, when we focus our attention on the data that describes Black maternal mortality, we run the risk of obscuring what many birth workers are doing every day to reduce these disparities and deliver tailored care.

Broadly speaking, birth workers are using data collection tools that fail to meet privacy standards, struggle to perform vital functions, and put patients and workers at risk of colliding with carceral systems. But that snapshot does not tell the full story. “Establishing Vigilant Care: Data Infrastructures and the Black Birthing Experience,” a report I authored, offers a birth-worker-led analysis of how data collection impacts Black patients.

I argue that doulas, midwives, and physicians who center Black patients’ experiences in their approach to care are uniquely attentive to these harms, and use their knowledge about how data collection is implicated in obstetric racism to protect themselves and their patients. In doing so, birth workers’ vigilant practice of adapting their data collection strategies is offering an effective model for protecting pregnant patients’ reproductive rights.

Across the board, pregnancy and childbirth involve comprehensive data collection. Providers gather patient data through conversations and medical instruments during clinical encounters and enter it into electronic health records. Doulas and midwives collect data about patients’ holistic needs through methods that range from handwritten notes to digital records. Insurance programs, most notably Medicaid, gather demographic and population health information. At home, patients can collect their own data using femtech apps and devices.

For Black pregnant patients, data collection carries gendered and racialized consequences. Data gathered during clinical encounters and on personal devices can be made available to government agencies and law enforcement in ways that criminalize and discipline Black birthing people—leading to imprisonment, child separation, and other forms of surveillance.

In the wake of the Supreme Court’s Dobbs decision, these risks are even greater, as patients and providers fear prosecution for receiving or delivering abortion care. In this environment, efforts to identify and prevent entanglements with carceral systems are even more vital.

Black-centered birth workers provide care designed to address the specific needs of Black birthing people. Rooted in Black American traditions connected to the African diaspora, these experts remain vigilant to obstetric racism and engage in protective strategies. They evade carceral data collection systems by teaching their clients how to navigate clinical encounters, compromise with faulty data collection systems and engineer work-arounds to ensure they can still provide holistic care, and refuse to collect information that can harm themselves or their patients.

Beyond the tech itself, policy changes are shaping how birth workers approach data infrastructures. In response to the Black maternal health crisis, many advocates have called for Medicaid to register doulas as covered providers. The doulas I spoke with expressed trepidation about these efforts, explaining that while they welcome the ability to provide more affordable and accessible services to their clients, the process to become an enrolled provider through Medicaid puts a strain on their practice.

Doulas typically use low-tech methods to gather data about their patients, opting to use handwritten notes or other forms of basic data collection. In contrast, Medicaid requires providers to meticulously document their care and interface with an online portal that doulas called “a complete utter nightmare.” This clash between traditionally low-tech doula care and the high-tech demands of Medicaid speaks to the larger disconnect between data-intensive approaches to care and the need to protect and better care for Black pregnant patients.

As they manage and deliver care to Black patients, birth workers are contending with the challenges and dangers posed by these different forms of data collection. “This is the future that our current data-driven understanding of the Black maternal health crisis gives to Black birthing people—a sociotechnical imaginary defined by death, dying, violence, incarceration, and mistreatment,” I write in the report. “This is also the future that birth workers and other advocates for Black birthing people are tirelessly working to prevent.”

Rather than a simple case demonstrating the value of Black physicians treating Black patients, when Black-centered birth workers care for both Black patients’ bodies and their data, all pregnant patients benefit. If we hope to improve care for the most vulnerable, preserving the agency these birth workers demonstrate is vital. Rather than turning toward increased or automated data collection, we should follow Black-centered birth workers’ lead as they identify and fight against pressing risks to Black pregnant patients’ right to joyful pregnancy, data privacy, and freedom of choice.

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