A group of black women in Birmingham have initiated a community-led research project that aims to give black mothers “total agency” over how their perinatal healthcare data is gathered, interpreted and ultimately used.

Drawn from Maternity Engagement Action (MEA) – an organisation that provides safe spaces and leadership for black women throughout pregnancy, birth and early motherhood – the women came together over their shared concern about the significant challenges faced by black women when seeking reproductive healthcare.

Through a process of qualitative data gathering – entailing discussions, surveys, workshops, trainings and meetings – the women developed a participatory, community-focused approach to black perinatal healthcare, culminating in the launch of MEA’s See Me, Hear Me campaign.

“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 perinatal period we need data from the community affected,” they said.

“Our vision is to work collaboratively with research bodies and the black perinatal community to create a model where the intersectional voices of black maternal women are centred, included and amplified in creating and implementing solutions to the issue of black maternal mortality and morbidity.”

Ultimately, the initiative aims to shift from the current top-down approach that defines black perinatal healthcare, to one where community data and input drives systemic change in ways that better meet the needs of local women instead.

Inequitable outcomes

Initially motivated by media reports that black women were five times more likely to die from pregnancy and childbirth than their white counterparts during the pandemic, the women started to speak about their own traumatic experiences of seeking perinatal support within Birmingham’s public health system.

In recounting their stories to one another, a number of common experiences emerged. This included facing a lack of continuity and consistency in their care, undermining black women’s agency and resulting in staff making assumptions about their birth plans; receiving less quality time with caregivers; being regularly denied pain relief when it’s requested; not being believed when they raise an issue; and being coerced into unwanted medical interventions, such as C-sections or inductions.

Speaking with Computer Weekly, Tamanda Walker – a sociologist and founder of community-focused research organisation Roots & Rigour – said it was common for women to feel like they were being passed from one part of the service to the next without any say in their treatment, leaving them feeling powerless in the face of it.

“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, adding that in one case, a woman with a prior mental health condition had to bite her tongue because any expression of distress was perceived as an indication of her mental health problem.

“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, because I’m already known to social services’, all the while she’s struggling in this labour situation and isn’t being heard.”

In an attempt to reverse these “unjust and inequitable” healthcare outcomes for pregnant black women, the group collated their experiences into a qualitative data set to use as the basis for further analysis and action. The entire process has been documented in a report published by the MEA.

The research process

Walker initially connected with the campaign at the Black Thrive Birmingham (BTB) Community Assembly in March 2022, an event focused on exploring how black-led research and data initiatives can put power directly in the hands of black communities.

She said the event largely revolved around exploring what it would mean for black communities to own their own data and interpret it for themselves, as well as what it would mean for them to be in a position where they had the power to design solutions in collaboration with the health system to ensure needs were better met.

Walker added this led to two years of work that involved the women from MEA gathering their own data on the experiences of local women who had gone through the health system: “One of the benefits has been, rather than women holding their own single stories in isolation, feeling as if they’re the only ones experiencing these problems, they’ve come together to look at how their stories map onto each other, and to see that they’re not alone and that there are numerous people going through these same experiences.”

She added while the datafication of people’s lives often risks reducing complex experiences to “objective outputs” – ultimately taking power away from people who are represented by that data and “putting it in the hands of who will make those decisions for them and without them” – melding the data already held by the healthcare system with the qualitative data generated by the campaign “gives people the power to tell their own stories”.

As it developed, the See Me, Hear Me campaign partnered with Connected By Data’s Catalysing community campaign initiative, which seeks to act as an startup-style accelerator for organisations or groups looking to leverage data in their social change efforts.

“Over that six-month programme, they incubated us, they did some upskilling for community organisations in understanding what data is, how you might think about a data cycle within community campaigning and organising, how you might design data work that’s about social change or certain kinds of interventions, and use that to add rigour and credibility to the change one’s pushing for,” said Walker.

“What I’ve found in my experience is that when community members that I work with – and I work with quite a lot of them beyond this – hear the words ‘research and data’, they’re like, ‘That’s complicated, that’s not for me’. As soon as you sit down and get them to tell their stories and get them to click that their story is a kind of data, a load of pennies start dropping, and a load of things become possible.

“It’s just about making what can feel like quite complex topics accessible to people, so that they have an understanding of how they can influence and shape their own realities.”

Next steps

Walker noted that because the See Me, Hear Me group were only able to gather a small data sample, the next step is undertaking work to expand the qualitative data set and match it with existing 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 more in depth qualitative data about the experiences of women in general, but black women in particular,” she said, adding that the plan is to build relationships with the local health system, and negotiate data sharing agreements so that the campaign can make sense of that data themselves.

“We need to know if ethnicity data is even collected, and then how we marry that with the qualitative data we’ve collected. If there isn’t appropriate collecting of that data…then we need to…work together and think about how we can use that data to drive change together.”

Walker added that this qualitative, community-led approach will only become more important with the further proliferation of artificial intelligence (AI) systems in healthcare settings, given their propensity to reproduce existing social biases.

“We know AI reproduces bias if it’s being used in diagnostics or other things. Some of the problems we identified in the current system was a lack of continuity and a lack of human empathy to it, so what does it mean to exist in a world where those kinds of changes might occur and we might be left behind?”

She added that while AI is great at crunching numbers, “there’s something about interpreting that data which is intimately tied to who you are, your position, and your power in society that needs to be unpacked”. She noted that the technology should be used to free up people’s capacity “to do the actual caring, the human piece of the exercise, rather than become the whole exercise”.

Through her organisation Roots & Rigour, Walker said she is already involved in other projects that are taking a similar community data approach to other issues that affect black communities in the UK, including around disproportionality in the rate of stop and search, and the health risks associated with commercially available black hair products.

“The idea is to think about how can we secure funding to develop these – and we want to build up to a national level the ones that are successful [so] you can begin to get a bigger picture and story of what’s going on.”

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