Racism, medicine and why we need to decolonise healthcare

In October, Annabel joined us on the Wellcome Genome Campus to speak about some of her work. Her powerful talk shone a light on some of the ways that racism and colonial thinking are embedded within medicine, science and institutions – and the difficulties of untangling it. Her examples spanned diagnostics – where gold standard, global tests include unevidenced ‘correction factors’ for race – to the power dynamics at play in gynaecology.

This post gives a brief insight into some of the issues she spoke about, reflections from staff who attended her talk, and links to further resources.

Annabel began by telling us about some of the experiences that have shaped her outlook, her passions, and her career choices.

As a teenager, Annabel had major spinal surgery, as advised by her doctor and her family. They gave the impression that she would be back to her old self relatively quickly, so she wasn’t expecting a long recovery time. But it did take a long time to recover, and this had a profound effect on her view of medicine. She reflected on the relationships between a doctor and patient: “What it taught me, essentially, is that doctors have a huge amount of power, and a huge role to play in how they define and explain people's and patients’ lives and journeys going forward,” she said.

“Being an author and a writer, I have the freedom to question. But also being a doctor, I work to guidelines, which use evidence that other people have produced. I am also a researcher, within the boundaries and confines of academia, but that gives me the freedom to critically analyse things.”

Dr Annabel Sowemimo

This experience was part of Annabel’s decision to enter medical school, albeit with a somewhat critical eye, and a desire to change things. During her degree, she spent a year studying medical anthropology, where she learned what she described as ‘hidden histories’ of many aspects of medicine, race science and eugenics.

Since she qualified, Annabel has specialised in sexual health. She discussed how racism and coercion are present in medical practice today, and she spoke about her own personal journey within decolonising medicine.

Annabel shared powerful examples of how race science and racism are ingrained within many areas of science, with outcomes that contribute to injustice and inequality. In medical diagnostics, she told us about the eGFR. The eGFR is a test to measure kidney function, used globally as a gold standard assessment for many conditions.

The eGFR was developed in the US, based on only a few studies, with small numbers by most scientific standards. These studies initially showed that in Black patients, there was an increased muscle mass, and increased creatine production, which the test measures. This led a ‘correction factor’ being introduced to the test results, for all Black patients.

“Medical practitioners are told to apply this correction factor if the patient is Black, or African American. It is a multiplication of the results. This multiplication is still used today. And everybody takes it in good faith – you learn about this in medical school textbooks, and you assume this is on a good level of evidence. It's what you're taught to utilise,” Annabel said.

“But if you think about it, it doesn’t make any sense. Firstly, the evidence isn’t there – the studies it is based on are not big enough. Secondly, who is Black? How is that defined? This differs from country to country. In many African countries, people define themselves tribally, for example, not as Black. What about people of mixed heritage – where do they go?”

A correction factor, of any degree, doesn’t account for the differences between people within a category - ‘Black’ - which is a social construct, not a biological one. “Skin colour isn’t a proxy for cellular functions,” Annabel said.

The result is that kidney function is being over-estimated in some people of Black ethnicity, and the correction factor may contribute to or amplify pre-existing inequalities and lead to inequitable or delayed care¹.

Yet in 2023, people are still deeply wedded to this idea. Annabel told us that a recent review in the US concluded that the correction factor can’t be removed unless there was further evidence as to what should take its place.

“This is ludicrous,” she said. “Why is it that with race science, we can introduce it on really bad evidence, but to take it away, you need mountains of evidence. That's deeply concerning”.

“I was already aware of some harmful racial and gender bias in healthcare and Annabel's talk shed light on its true pervasive nature, and the fact other fields use faulty measurement systems. One example Annabel gave was craniometry is still used in anthropology to classify people. It was also interesting learning that the Pearson coefficient used in statistics today, had initially been used to determine racial likeness.

“Given how widespread racial bias is in healthcare and society, it is certain we will find bias in the work we do on Campus. As a Campus working in life sciences, particularly to improve or understand human biology, I think it is important for us to be critical about anything which could negatively impact racialised groups. Only when we can point to problematic thinking in our work, can we begin to change it.”

Reflections on the talk from Piraveen Gopalasingam,
Scientific Training Officer, European Bioinformatics Institute (EMBL-EBI)

Annabel shared a similar example, of the spirometer lung function test. Again, the test is based on little, and flawed, evidence. The spirometer test likely contributes to inequalities, as it means that lung function is underestimated for many Black and Asian patients, including those recovering from COVID, as they do not meet the thresholds for lung rehabilitation.²

She reflected on how things like the eGFR came to be. “In many of the examples I’ve given, people did not necessarily set out to do harm. They didn't say, Oh, I'm going to create an eGFR that's going to make people not get dialysis treatment on time. That wasn't their aim - they were trying to do a good and useful thing. Sometimes 10 years down the line, we realise that these things are actually deeply harmful.

“If you create a tool of measurement, and people agree with you, and they think that this is really great, then that measurement is going to get replicated. And it's even more of an issue now when we're thinking about algorithms and AI, because those things get replicated at scale, really quickly. And sometimes it's very difficult to put it back in the box.”

She encouraged people to think deeply about their roles in research, and about the evidence they are producing. She asked scientists to reflect on what the end product of their research might be.

Annabel discussed how racism is built in to many places, not just in diagnostics. It extends to patient management, drug management and drug development.

“What often happens is there's this layer of acceptance. People need to pass exams, they are taught not to interrogate things. And then what happens is that mostly, researchers don't want to look at the problem further. So there's a lack of understanding or a lack of development. We continue not to question things. There's no way that an ACE inhibitor, for example, is going to be the best possible treatment for all Black and African people with high blood pressure.

“Skin colour is not a proxy for what's going on underneath you, genetically. It's much more complicated than that. But often our research doesn't want to go anywhere beyond that. And it's very difficult to push the conversation, because in people's minds, that has become kind of accepted and that's normal.”

Annabel also spoke to us about how the results of scientific research are used. “A lot of people are often not aware of what happens to their research. Many scientists are, naturally, focused on getting the next grant, the next piece of funding. But it is important to think about what happens to the results of your research.” Annabel is involved in the Universities Allied for Essential Medicines³, a group that encourages researchers to ensure that the drugs they help create are distributed fairly.

“I think researchers at the earliest stages of their career need to think about this. Then, when you develop information or you develop drugs, you can ultimately put this into a system of equitable access, rather than a system of access purely for profit, or in a system where whole groups of people or whole countries may not be able to have a benefit from a drug for decades until it comes off patent. I think these things are really important in terms of us trying to push it against current systems of power, or it just becomes normalised.”

“Annabel's talk highlighted to me that it's right and important to challenge why and how things are done to scrutinise the credibility of 'facts' and evidence on which actions are based. Whose interests are they serving?

“It's important to be a disruptor - complacency is complicity. If we aren't actively advocating for, and trying to action, change, then we are part of the problem. We all have a role to play and we can't just leave it to individuals like Annabel to do the work.”

Reflections on the talk from Karen Cafferkey,
Administration Network Manager at the Wellcome Sanger Institute

Annabel ended her talk by considering the nature of decolonising and its meaning. She shared a quote from Professor Linda Tuiwah Smith, from the book Decolonizing Methodologies⁴: “When we talk about decolonising, we're talking about acknowledging the often harmful distorting of knowledge derived from colonialism, and restructuring our society to dismantle that. It is about centering the experiences of indigenous populations.” While this quote refers to the indigenous Māori context, Annabel stressed there is much to learn from having more than a single story.

“What ‘decolonise’ is not saying is that we have to throw everything away,” she said.

“It's really a practical tool for understanding how some of our [health and research] systems have been set up, and why they continue to benefit the same people, as well as how can we fix these structures. It’s about redressing existing power structures.

“One of the things I'm thinking more and more is how doctors and scientists act as gatekeepers, and what that means. Ultimately though, everyone has power, like when I was a teenager, to define things.”

Annabel’s final comments were about the balance in life. “I think we also need to acknowledge that life is supposed to be for living. I am a very happy person. I like to go outdoors, walk my dog, and see my friends.” Annabel recommended a book to read⁵ on the power of rest as a necessary step in resisting systemic oppression. She shared a quote: ‘You were not just born to centre your entire existence on work and labour. You were born to heal, to grow, to be of service to yourself and community, to practice, to experiment, to create, to have space, to dream and to connect.’

“Annabel’s talk gave me a better understanding of how diverse and omnipresent racism is in healthcare and that simply increasing diversity is not the answer.

“I was not aware and very shocked that there were still different parameters used to decide dosage for medicine based on skin colour despite there being evidence that this is not correct.

“I plan to read Annabel’s book ‘Divided’.”

Reflections on the talk from Lisa Hellier,
Quality Manager at the Wellcome Sanger Institute