A group of black women in Birmingham launched a community-led research project to empower black mothers regarding their perinatal healthcare data. This initiative grew from Maternity Engagement Action (MEA), which supports black women during pregnancy, childbirth, and early motherhood. They banded together, concerned about the barriers black women face in accessing reproductive healthcare.
These women engaged their community through discussions, surveys, workshops, and meetings, ultimately kicking off the MEA’s See Me, Hear Me campaign. Their goal? To show policymakers the importance of community-driven research and how it can inform better policies. The statistics are alarming: black women are 3.7 times more likely to die during the perinatal period compared to white women. They want to change that by ensuring that the voices of black mothers shape the data used in decision-making.
They aim to reshape the current top-down healthcare model, pushing for an approach where community input leads to real change that addresses local women’s needs.
Motivated by alarming reports during the pandemic indicating that black women faced a higher mortality risk from pregnancy and childbirth, these women began sharing their own experiences within Birmingham’s health system. They found common ground in their stories—too often, they dealt with inconsistent care, faced challenges in being heard, and felt coerced into medical interventions against their wishes. Tamanda Walker, a sociologist and founder of Roots & Rigour, highlighted that many women felt powerless, caught in a system that didn’t prioritize their voices.
Despite the trauma, their shared stories turned into a powerful collective experience, fueling their research. They documented their findings in a report, creating a qualitative dataset aimed at driving further analysis and action.
It all kicked off for Walker in March 2022 during the Black Thrive Birmingham Community Assembly, where they discussed the importance of black communities owning and interpreting their data. This inspired two years of collaboration, with MEA members gathering data from local women to show they weren’t alone in their struggles.
Walker emphasized how crucial it is to combine what the healthcare system knows with the stories that women bring. By blending these perspectives, they aim to give women authority over their narratives and engage them in shaping solutions together with health providers.
The See Me, Hear Me campaign received additional support from Connected By Data’s Catalysing community campaign initiative. Over six months, this partnership helped them gain insights into leveraging data for social change.
Walker observed a shift in attitudes among women when they understood their personal experiences could be considered valuable data. By simplifying complex topics, they empowered the community to realize they could influence their circumstances.
Moving forward, the See Me, Hear Me group aims to expand their qualitative dataset and link it with existing NHS data. Walker pointed out that the current system often overlooks ethnicity and quality-of-care data, particularly for black women. Their plan involves fostering relationships within the health system to negotiate data-sharing agreements to make sense of the collected data collaboratively.
As AI systems become more prevalent in healthcare, this community-led approach becomes even more critical. Walker noted AI can reproduce existing biases found in traditional healthcare. If the human element, empathy, and continuity are lacking in care, those on the margins risk being further sidelined. While AI can process data, it can’t replicate the nuanced understanding that comes from lived experiences.
Walker’s organization, Roots & Rigour, is already exploring a similar community data approach for other pressing issues within black communities in the UK, like stop-and-search rates and health risks from certain hair products. They hope to secure funding to expand these efforts nationally, painting a broader picture of the issues at hand.