A Door-to-Door Effort to Find Out Who Died Helps Low Income Countries Aid the Living

Augustine Alpha gets off to a smooth start. “Who lives in this house?” he asks the young man, who has come from the field to answer his questions.

Your name? Age? Religion? Civil status? In what grade did you leave school? Have you got a bike? Mr Alpha types the young man’s answers on the laptop placed on his skinny knees.

Then comes the key question: “Has anyone died in your home in the last two years?”

“Yes,” says the young man, “my mother.”

Mr Alpha expresses sympathy for her, asks her name, was it Mabinti Kamara, and then plunges in: was she sick? How long? Fever? Going up and down, or constant? vomiting? Diarrhoea? Tremors? Did she see a doctor? Get medication? Have pain? Where was the pain and how long did it last?

Millisecond. Kamara’s son is reluctant at first but soon finds himself caught up in telling the story of his mother’s last few weeks of life, describing unsuccessful trips to the local clinic. Mr Alpha plays until all the details have been entered into software for a public health survey called Nationwide Mortality Surveillance for Action, or COMSA. He then closes his laptop, places a sticker on the front window’s wooden shutter that marks Kamara’s house as inspected, reiterates his wishes, and moves on to the next house.

In this way, Mr Alpha and three colleagues will gather, over a few days, the details of every death that has taken place in the town of Funkoya since 2020, using a process called an electronic verbal autopsy. The data they collect goes to the project’s headquarters at Njala University, in the town of Bo, a few hundred kilometres to the east. There, a doctor reviews the symptoms and description and classifies each death according to its cause.

It’s an extraordinarily labour-intensive way of establishing who has died and how, but it’s necessary here because only a quarter of deaths in Sierra Leone is reported to a national civil registration system, and none of the deaths has an assigned cause. Life expectancy here is only 54 years, and the vast majority of people die from preventable or treatable causes. But because there is no data on the deaths of its citizens, the Sierra Leonean government plans its health care programs and budget based on models and projections that are ultimately just best guesses.

There are a variety of reasons families don’t report the deaths of people like Ms Kamara to a national registry, none of them complex. The registry office may be too far away and they cannot afford the transportation costs or find the time to go there or pay the nominal death certificate fee. They may never have heard of the practice; the state has very little presence in their lives. The dead are buried behind their houses or in small village plots, as Mrs Kamara said it was; the local chief could then make a note in a ledger, the contents of which would never travel outside the village. Hospitals in Sierra Leone also do not automatically share their death records.

Sierra Leone is not an anomaly. The collection of vital statistics throughout the developing world is poor. While progress has been made in recent years in terms of birth registration (which is linked to access to education and social benefits), almost half of the people who die globally each year do not have their deaths registered.

“There is no incentive in death registration,” said Prabhat Jha, who directs the Center for Global Health Research in Toronto. He pioneered such efforts to count the dead two decades ago in India; Doing it now in Sierra Leone, one of the world’s poorest countries, has shown that the model will work anywhere and has helped bolster a government eager to base its policies on evidence and hard facts.

The subject of vital statistics registration is not glamorous, but it is vitally important to understanding public health and socioeconomic inequality. Covid-19 has brought new attention to the topic. The debate over how many people have died from the coronavirus and who they were has turned political, and in countries like India, lower death counts have served the agenda of national governments hoping to downplay the role of policy. failed.

We mustn’t know only how many people died, but also who they were and when they died, said Stephen McFeely, director of data and analysis at the World Health Organization. “As we come out of the eye of the storm, this is when you talk about learning lessons.”

There is, for example, a fierce debate among epidemiologists about whether Africans are dying of covid-19 at the same rate as people in other parts of the world, and if not, what might be protecting them.

When countries do not know who has died and how efforts to reduce preventable deaths are complicated. Sierra Leone’s government allocates its budget, as many developing countries do, based in part on models provided by UNICEF, WHO, the World Bank and other multilateral agencies that project the number of people who will die there each year from malaria. typhoid fever, car accidents, cancer, AIDS and childbirth. These models are based on global estimates and are based on dozens of individual studies and research projects, which can do a reasonably good job of estimating the big picture but are sometimes much less accurate at the national level. As Dr Jha explains it, malaria data that comes from Tanzania or Malawi will not necessarily be accurate for Sierra Leone, even though all three countries are in Africa.

“You want countries to make decisions based on their data, without relying on a university in North America or even the Geneva office of the WHO,” he said.

The information gathered through this painstaking door-to-door work has shown that the models can be drastically wrong. “When you count the dead, you only get information that you didn’t expect,” Dr Jha said.

The first COMSA study analyzed the homes of 343,000 people in 2018 and 2019, of whom 8,374 died. The verbal autopsies produced discoveries so startling that Dr Rashid Ansumana, co-director of the project, refused to believe them for months until the revelations were verified over and over again in several different ways.

“I was convinced by facts and evidence,” said Dr Ansumana, dean of the community health faculty at Njala University. “And now I can convince anyone: the data is amazing.”

The first big surprise was malaria. The investigation showed that he is the biggest adult killer in Sierra Leone. Dr Ansumana said that in medical school he was taught that malaria killed children under 5, but that people who survived childhood had immunity that prevented repeated malaria infections from taking their lives.

Almost everyone who works in health care in Sierra Leone believed it, he said. The graphed data showed that malaria deaths formed a U-shaped curve, with very high numbers among young children and lower among young adults; the numbers then rose again in people over 45.

The second shock concerns maternal mortality. The study found that 510 out of 100,000 women die in childbirth, a staggeringly high rate, but still only half of what United Nations agencies reported for Sierra Leone. The finding was a relief to the government, Dr Ansumana said because it showed that the resources invested in making childbirth safer for women and babies were paying off.

A second round of the national survey is now underway, which seeks to illuminate, among other things, the health impact of Covid-19.

To secure this kind of data without going door-to-door, Sierra Leone is working on reforms to its civic registry and is one of many countries trying to figure out how to ensure more deaths are counted.

Many of these arrangements are simple and don’t cost much, said Jennifer Ellis, who runs a program called Data for Health, run by Bloomberg Philanthropies, that aims to boost the collection of health data in low- and middle-income countries.

It begins with a review of an existing death certificate to collect user information about who died and why andand training clinicians to be aware of why a specific cause of death matters (ie, for example, why it matters if death is recorded as “pancreatic cancer” rather than “abdominal pain”).

“It must change the way data flows,” he said, because it can be collected by a national interior ministry and not shared with a health ministry. The data needs to be digitized, so it doesn’t just fall apart in the ledgers. It should be easy for people to go somewhere to register a death and for free.

Another step is a routine collection of verbal autopsies for all those who die outside the health system. This involves identifying and training people at the community level, such as midwives or community health workers and others who can provide basic primary care in low-income countries, to try to collect information on each death.

Digitizing is expensive, Dr Ellis said, but the other steps cost very little. Fewer than 5 per cent of deaths in Zambia included a cause recorded when Data for Health joined the government there in 2015; by 2020 that figure had risen to 34 per cent. Peru introduced a digitized cause-of-death reporting system that now makes death information available in real-time; Because it had robust and quickly accessible data, it reported some of the highest COVID death rates in Latin America.

Information captured by new death registration systems has quickly been translated into health policy. When an enhanced collection of causes of death revealed that traffic accidents were among the leading causes of death in Colombia, his government moved quickly to introduce safety protections in the hardest-hit areas. In India, the recorded number of people dying from snake bites exceeded the WHO estimate for the entire world; the antivenom was made available in more primary care centres in severely affected areas.

But while many countries are eager to turn what they learn from death statistics into policy, others are hesitant. “I’m not sure all governments understand the power of data and let’s be frank, a lot of governments probably don’t want to measure it either,” the WHO’s Mr MacFeely said. Some see the higher Covid death counts as an indictment of their responses to the pandemic, he said.

Still, he said, the WHO is encouraging countries to treat vital statistics data as they do other forms of infrastructure, such as gas systems or power grids.

“This is part of running a modern country,” he said.