Our death certificates don't record ethnicity. During Covid, this gap became deadly

“I think we lost several weeks,” Dr Manish Pareek, a clinician at the Leicester Royal Infirmary, tells me. “If we had known from the outset that BAME people were more at risk from Covid-19, perhaps the public health messaging might have been different.”

Months into the lockdown, it is now clear that ethnic minorities in Britain are more likely to die from Covid-19. Approximately 94 per cent of the doctors in Britain who have died from the illness were BAME, as were 60 per cent of the healthcare workers. And while only 14 percent of England are non-white, they made up about a third of all Covid-19 patients in intensive care during April. As unprecedented as the pandemic was, we could have been better prepared—and one crucial measure has to do with how England and Wales records its death certificates (Scotland became the first UK country—and one of the first in the world—to do so in 2012.)

When the first few people in Leicester started dying from Covid-19 in early March, doctors filled out a short form to keep track of deaths. Only a page long, the form asked for some certain facts like the name, age and address of the deceased. “But it didn’t ask for the person’s ethnicity,” says Pareek. “We didn’t have real time information,” he continued. “I believe London was about three weeks ahead of us in terms of the pandemic. If they could have told us that we’re seeing young Asians and Africans coming in quite sick—we might have monitored them a bit more closely.”

But Pareek says this goes beyond what happens in the hospital. “The public messaging so far has been very unidimensional,” he says: “If you consider the fact that there are different members of society who have different risks, why wouldn’t you try and target them differently?" "If I’m Asian and a bus driver in my sixties—perhaps this would have made me be more circumspect about my job at the beginning,” Pareek tells me.

Data collected from death certificates could have helped officials develop a more multidimensional approach to public health messaging—one that takes into account how different communities may be affected by the virus. Dr Olivia Stevenson and Dr Siobhan Morris at UCL have publicly called for ethnicity to start being recorded on all death certificates.

“It’s about collecting the best and most robust data possible so that it can be analysed in an intersectional way,” Morris tells me. “As this data [on a patient’s ethnicity] wasn’t collected as standard, you began to see a narrative about how Covid was a great leveller” in early March, Stevenson adds. The messaging about the virus then, she says, was that everyone was at equal risk. Though this narrative gradually changed, Stevenson says that this could have happened a lot faster had we had collected this data earlier.

“It’s not just about being in a pandemic and not knowing what you’re doing,” she says. “It’s about how you prepare for subsequent pandemics.” The problem right now, they both say, is that we are playing catch up to the data and don’t have the luxury of time to discuss how best to analyse it.

“Take the over 70s for example—some are still working, some aren’t. Some are in good health, some aren’t. How do you differentiate between them all?” she says. “It’s quite hard to have a debate about this now, amidst a pandemic.”

Both note that there are challenges in convincing the public to hand over this information. “There’s a suspicion of the state getting ever larger and starting to collect more and more data on you,” says Morris. But she notes that collecting more data must go hand in hand with raising awareness about why you’re collecting it. “If people understand that you’re collecting it to better target health interventions, then I think people will understand,” she says.

In 2012, Scotland started recording ethnicity on its death certificates on a voluntary basis. But data published by National Records Scotland up until April 26th show that ethnicity was not recorded in nine per cent of Covid-19 cases. According to those stats, only one percent of Covid-19 deaths in Scotland were BAME. This figure highlights that collecting additional data on death certificates is a no easy feat. But that doesn’t mean officials should give up.

In 2009, Dr Harry Burns, Scotland’s Chief Medical Officer, wrote “The reason we know less than we should is largely because we do not collect data on ethnic identity on the death certificate and efforts to do so for health records have been patchy so far.”

Over a decade later, Britain is paying the price for not taking this lack of data seriously. While minority groups have understandably been cautious about volunteering such data to the state, the state too has been slow to understand the benefits this data could provide to those groups—and communicate it.

Stevenson suggests that the key to gaining the trust of minority groups is to give the job to a non-governmental body like the Office for National Statistics and points to the success of the census. “The census is not seen like a government department announcing they want to collect data on you,” she says.

Since mid-April, as researchers began to report that BAME people may be at a disproportionate risk, all Covid-19 cases and deaths have been recorded by ethnicity. It was a major change in policy, but Stevenson believes there will be a greater public reckoning on the value of such data once we have a chance to reflect.

“I think when we have the full picture of those who have died by ethnicity—it will be so shocking, that politicians will need to be seen doing something,” she says.