Jan 27, 2025 Story by: Editor
In Birmingham, a group of Black women has launched a community-driven research initiative aimed at giving Black mothers full control over how their perinatal healthcare data is collected, analyzed, and used.
The project stems from Maternity Engagement Action (MEA), an organization dedicated to creating safe spaces and leadership opportunities for Black women during pregnancy, childbirth, and early motherhood. These women, united by shared concerns over the challenges Black women face in accessing reproductive healthcare, have developed a participatory approach to addressing these issues.
By conducting qualitative research—encompassing discussions, surveys, workshops, and training sessions—the group established the MEA’s See Me, Hear Me campaign, which seeks to bring about systemic changes to Black perinatal healthcare.
“We want policy-makers to see the benefits of community-led research and community-driven data and use it in policy development. For there to be real change to the current statistics that Black women are 3.7 times more likely to die than white women during the perinatal period, we need data from the community affected,” they stated.
Their ultimate vision is to work collaboratively with research institutions and Black perinatal communities, ensuring the voices of Black mothers are at the forefront of efforts to address maternal mortality and morbidity. The initiative seeks to replace the existing top-down healthcare model with one that is driven by community input, enabling more responsive and equitable care.
Addressing Inequitable Outcomes
The initiative was sparked by media reports revealing that Black women were five times more likely than white women to die from pregnancy-related complications during the pandemic. These findings prompted participants to share their own harrowing experiences with Birmingham’s public health system.
Common themes emerged, including inconsistent care, a lack of continuity, and diminished autonomy, with caregivers making assumptions about birth plans. Many women reported being denied pain relief, dismissed when raising concerns, or coerced into unwanted medical interventions such as C-sections or inductions.
Tamanda Walker, a sociologist, and founder of Roots & Rigour, explained to Computer Weekly that many women felt powerless due to fragmented care. “Many of the women involved were making the very basic point that if they encounter trouble and raise it during the perinatal period, they often don’t feel seen or heard by medical professionals,” she said.
Walker highlighted one case involving a woman with a prior mental health condition who hesitated to express distress, fearing it would be misinterpreted as a mental health issue. “That was exacerbated for her because she came from a poorer background, so her fear was, ‘If I show too much distress, my children will be taken away,’” Walker added. This fear compounded her struggles during labor as she felt unheard.
In response to these inequitable outcomes, the group compiled their collective experiences into a qualitative dataset, which now serves as the foundation for further research and advocacy. MEA has documented the entire process in a newly published report.
A Community-Led Research Process
Walker connected with the See Me, Hear Me campaign at the Black Thrive Birmingham Community Assembly in March 2022, where discussions centered on empowering Black communities to take control of their data and design solutions in partnership with the healthcare system.
The collaboration spanned two years, during which MEA participants gathered firsthand accounts from Black women navigating the healthcare system. Walker noted, “One of the benefits has been, rather than women holding their own single stories in isolation, they’ve come together to look at how their stories map onto each other.”
Walker also cautioned against the risks of reducing lived experiences to mere “objective outputs” in data-driven systems, which can strip power from the very people represented by the data. She emphasized that combining community-generated qualitative data with existing healthcare data enables Black women to reclaim their narratives.
The campaign also partnered with Connected By Data’s Catalysing Community Campaign initiative, which helps organizations use data to drive social change. “Over that six-month program, they incubated us, upskilling community organizations to understand data cycles, design data work for social change, and add rigor and credibility to their advocacy,” Walker said.
She explained how breaking down complex topics like data and research empowered participants: “When community members realize their stories are a kind of data, a lot of things become possible.”
Next Steps and Future Goals
While the See Me, Hear Me campaign has made significant progress, Walker acknowledged the limitations of their small sample size. Moving forward, the group aims to expand its qualitative dataset and align it with NHS systems data.
“One of the problems we have is that the system isn’t always collecting data, and they’re not always collecting data on ethnicity or qualitative experiences,” Walker noted. The group plans to establish relationships with local healthcare providers to secure data-sharing agreements and further their analysis.
Walker also highlighted the importance of community-led research in the context of increasing reliance on artificial intelligence (AI) in healthcare. She warned that AI systems often reproduce existing biases, particularly in diagnostics. “There’s something about interpreting that data which is intimately tied to who you are, your position, and your power in society,” she explained.
Through her organization, Roots & Rigour, Walker is involved in similar community-led data initiatives, addressing issues like racial disparities in stop-and-search practices and health risks associated with Black hair products. “The idea is to secure funding and scale these efforts nationally, providing a clearer picture of the systemic issues affecting Black communities.” Source: Computer Weekly
