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Image: Getty Images
Image: Getty Images

SocietyJuly 28, 2022

What is medical bias, anyway?

Image: Getty Images
Image: Getty Images

Medical bias and systemic racism are terms often used to characterise health inequity in Aotearoa. But what does that mean, exactly? Naomii Seah explains.

“If you don’t take a temperature, you won’t find a fever,” says Kai Tahu researcher and physician Sue Crengle.

Crengle is speaking on the state of inequity in the medical system of Aotearoa. In other words: if you don’t look, you won’t find it, and minority populations will continue to suffer worse health outcomes.

Her colleague Gillian Whalley agrees: “When I started I knew there were problems [with medical inequity]. 20 years ago I wouldn’t have called it systemic racism. But as… I’ve looked for it, I can see it everywhere now.” 

Last week, Crengle and Whalley released a new research paper in the New Zealand Medical Journal, which found that using international medical standards may lead to the under-recognition of cardiac enlargement in Māori and Pacific populations.

Currently, the international reference ranges for heart size are based largely on studies done on Pākehā. In other words, what’s “normal” in medicine is often defined by whiteness and maleness, as it is in other aspects of society. Sound familiar? Just as speaking English is “normal” and other languages aren’t, so are NZ European bodies “normal”, which dismisses the population specific needs of other groups.

Here, it’s important to note that “population specific needs” is not a term that supports biological determinism, which is the concept that biology is the defining factor in health risks and outcomes – a concept that leads straight to eugenics. Biologically, ethnic groups are not fundamentally different from one another. Research shows that the use of ethnicity as a determinant of health is actually a stand-in for many other complex issues. Rather than being a purely biological difference, ethnicity often dictates how we are perceived by others, and therefore how we are treated.

It’s mostly through social bias, then, that ethnicity can have a measurable impact on health outcomes. However, some general differences between ethnic populations may exist; for example, East Asians tend to be shorter than other populations. These differences could themselves be a result of complex social factors and are often understudied, and it’s difficult to point to specific causes. But whatever the truth is, ignoring these differences can also result in medical inequity.

Crengle and Whalley’s paper shows what medical bias can look like in a New Zealand context. Here’s a brief run-down: heart size is correlated with body size and composition, so it usually follows that a taller individual will have a larger heart. The assumption is therefore that Māori and Pacific people may have heart sizes on the upper range of “normal” as they may be taller and larger than NZ Europeans – that was the hypothesis the researchers began with. To test this assumption, Crengle and Whalley measured the heart size of 263 healthy self-identified Māori or Pasifika adults.

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What they found was in fact the opposite – heart sizes of healthy Māori and Pasifika adults (with no significant medical conditions such as renal failure, heart disease, pregnancy) were significantly smaller than the upper limit of “normal”. That means Māori and Pacific populations may need a lower reference range for heart size than what’s currently in use in the cardiovascular field. In simple terms: enlarged hearts may be going undiagnosed in Māori and Pasifika patients. Heart enlargement is a risk factor for coronary disease, and this under-diagnosis could explain some of the statistically poor health outcomes for Māori and Pasifika in New Zealand.

The leading rhetoric in these health inequities is that Māori and Pacific populations have increased risk factors, or may present late to medical services. But medical inequity also lies in who the system is built for, and who it caters to.

“I had never really liked the way we decide on simple numbers [to define what] is the norm or not,” says Whalley. She gives the example of body mass index (BMI), which is a simple number based on height and weight. It’s often used as a proxy for overall health, and it’s an important number in deciding access for many medical treatments.

“It doesn’t take into account body composition,” notes Whalley, which is only one of the myriad issues with the measure. This means BMI doesn’t factor in whether your weight is concentrated in muscle mass or fat. And surprise, surprise, “normal” BMI ranges are based mostly on NZ European bodies. (The reference ranges are also very outdated and stigmatising, but that’s a whole other conversation). This has impacts on Māori and Pacific health. Whalley notes that “it’s quite hard for Māori and Pacific people to get kidney transplants because they’re considered too overweight.” But BMI is “crude”, as Whalley puts it, and it’s one of the many measures that can prevent equitable access to healthcare. “Medicine is super complex… there’s a massive risk of oversimplification.”

And that oversimplification is why until recently, medical research didn’t see the issue with generalising studies based largely on cisgender Pākehā male bodies to all populations.

Another example you may have heard of is heart attacks in women. Clinical trials studying heart attacks often excluded women, which meant that the gender specific symptoms of heart attacks in women went largely unrecognised. Public health announcements and media portrayals of coronary events tend to show a man having chest pain. But women are more likely to experience shortness of breath, back pain and nausea; they’re also more likely to suffer heart attacks without chest pain at all. The gap in medical research has been linked to worse health outcomes for women. Women are more likely to die from a heart attack than men, and are more likely to have recurring coronary events as well as more likely to develop disabilities from heart failure.

It’s these gaps in knowledge and research that contribute to inequitable health outcomes. It’s telling that wahine Māori and Pasifika women tend to have even worse outcomes than Māori and Pacific populations generally. Medical bias exists where any social bias exists. But how do we address it?

Crengle, who’s recently been appointed to the new Māori Health Authority, believes that New Zealand specific reference ranges are needed for more healthcare fields, and that we shouldn’t rely on international standards. Whalley agrees, noting that the Māori Health authority is an important first step to achieving more equitable healthcare in New Zealand. Whalley and Crengle both want more attention directed at population specific medical research, and targeted interventions.

“It’s about asking communities what is important to them,” adds Whalley.

“I think the old concept of equality, treating everybody the same, will not raise Māori and Pacific health onto an equal level with Pākehā health. Treating everybody equally has 100% led to unequal outcomes. Something’s wrong. We’ve got to fix it.”

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Image: Tina Tiller
Image: Tina Tiller

OPINIONSocietyJuly 28, 2022

Mask disdain and the privilege of a healthy body

Image: Tina Tiller
Image: Tina Tiller

Choosing to ‘move on’ from Covid is a privilege immunocompromised people like me can’t afford, writes Melody May.

A year ago I didn’t think that wearing a mask in New Zealand would become a political choice. I thought we would never do that. Now, more than half of the people I encounter aren’t wearing one. I hear people complaining that it’s governmental control or it’s inevitable we’ll all get Covid so just relax. I cannot afford to relax and many others cannot either – those of us with “underlying conditions”. It’s that label, that thing you look for in reports about Covid deaths – a justification. It’s the thing that allows us to feel empathy and yet remain comfortable with continued inaction.

Many suggest that we “move on” from Covid. That the world has “moved on” – they aren’t wearing masks. What exactly should we move on from? Covid is still here, and people are dying. In 2020, I had a profound sense of gratitude to be able to call New Zealand home. Suddenly, people knew what immunocompromised meant. I no longer faced the vacant nod or the terrified back-step when they thought it was contagious. But more than that, my life had value. People made sacrifices to protect each other and the vulnerable. That’s me. I felt a profound shift toward community care. 

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— Ātea editor

The value of independence permeates our culture. And it’s accompanied by rhetoric about preferring death to being a “burden”. This value leaks out of everything from ACC ads to politics. The ideal is so pervasive that most people think it’s innate to our identity. However, many cultures value interdependence as the ideal. For about nine months in 2020, I saw a new future for those with chronic conditions and disabilities. We were not just a burden. Our lives had value. And, I thought this was only the beginning. We’d see that we are all connected, and we’d look after every vulnerable group. We’d start questioning other structures that exclude people and label bodies as expendable to the corporate agenda. 

But then there was a shift right back to where we started. There was the economy to think about. The goals shifted from saving lives to “acceptable” losses. It’s strange to think of my possible death as an “acceptable” loss. I’d be a quantitative footnote in the statistics of history. But I don’t feel my death would be acceptable. I’m a single parent of a fabulous teen daughter. I have years to wonder why she won’t wear a coat and years to torture her – begging her to share just two more hot chips until I’ve eaten half of her treat.

There’s one simple act we can all do to ensure that not only do I go on annoying my daughter, but that Dad continues to tell the one about the fish wearing a bow tie and that Nana continues to bring the strange tangy potato salad to family dinner: masks. I wear one, you wear one – fewer people die. I can go on forcing my daughter to watch puppy videos, and she can force me to learn a TikTok trend. It’s the simplest way we continue to value business ventures as well as people’s lives. Yet this is what some have chosen to associate with a “human rights” violation. As a woman and as someone with a disability, this is the very definition of mind boggling. As a researcher, I’m intrigued.

My PhD research focused on the problem of communicating invisible pain and illnesses. I found one glaring barrier to communication: fear. When we’re confronted with someone who is sick or in pain, our primitive-protective brain intervenes. Our empathy allows us to say, “If it can happen to them, it can happen to me.” The primitive brain first wants to protect us from that illness, but then it wants to protect us from the fear that comes from facing our fragility. So, our brains search for an explanation – a reason it happened to them. It’s what scholars call “the myth of control”. It’s a mindset that those with healthy bodies adopt in order to believe that they’ve successfully controlled their body into health… and those who are ill have not. 

This is why I often find myself in conversations about the curative power of drinking rattlesnake venom or that good-old standby, the vegan diet. This seems to be the problem both with wearing masks and acceptance of “inevitable” deaths. We are afraid. And when we’re afraid we tend to react with our protective brain. We want to be in control. And for some reason the advice to wear masks feels, for some, like an abdication of control. 

However, a healthy body is a privilege – just like any other privilege, you can use it to protect others or you can abuse it. I may get Covid and survive. But I don’t have the privilege of a healthy body. I might have to stop taking my meds so that my body can fight. Or it just might make my illness worse. We know that masks reduce our risk by 56-86% (CDC) depending on type. Yet many people are not only refusing to wear masks, but they’re impatient or even angry about other people wearing masks. This attitude is a luxury only privileged bodies can afford. 

To those who want to “get it and be done with it”. I get it. I wish this thing would be over. This virus made my already complicated life look like a sitcom compared to this dystopia. But please remember, you may get reinfected. I don’t want you to get long Covid and gain the horrid label of “underlying condition”. To those who are trying to regain a sense of control in these chaotic times by refusing to wear a mask: it is your choice to wear a mask. Since it’s your choice, could you choose kindness? Every time I see someone wearing a mask, I assume they’re either someone like me or they care about someone like me. Would this be a label you could be happy to wear? The label that says: I care about me AND I care about others. The label that says: I have a privileged body, and I use it to be kind. 

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