Door-to-door effort to find out who died helps low-income countries help the living
FUNKOYA, Sierra Leone — Augustine Alpha is starting slow. “Who lives in this house? he asks the young man who has come from the fields to answer his questions.
Your name? Age? Religion? Marital status? In what grade did you leave school? Do you own a bicycle? Mr. Alpha types the young man’s answers into the laptop perched on his slender knees.
Then comes the key question: “Has anyone died in your home in the past two years?”
“Yes, said the young man, my mother.
Mr. Alpha expresses his sympathy, asks her name — it was Mabinti Kamara — then launches out: Was she sick? How long? Fever? Rise and fall, or stable? Vomiting? Diarrhea? Tremors? Has she seen a doctor? Get medicine? You are hurt ? Where was the pain and how long did it last?
Mrs. Kamara’s son is initially reluctant but is soon caught up in the retelling of the last weeks of his mother’s life, describing the fruitless trips to the local clinic. Mr. Alpha taps until every detail has been entered into software for a public health survey called National Mortality Surveillance for Action, or COMSA. Then he closes his laptop, sticks a sticker on the wooden shutter of the front window indicating Kamara’s house as inspected, reiterates his condolences and moves on to the next house.
In this way, Mr. Alpha and three colleagues will, over a few days, collate the details of every death that has occurred in the village of Funkoya since 2020, using a process called an electronic verbal autopsy. The data they collect goes to the project headquarters at Njala University in the town of Bo, a few hundred kilometers to the east. There, a doctor reviews the symptoms and description and classifies each death according to its cause.
It is an extraordinarily laborious way of establishing who died and how, but it is necessary here because only a quarter of deaths in Sierra Leone are reported to a national vital statistics registration system, and none of deaths has no cause. Life expectancy here is only 54 years and the vast majority of people die of 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, not , only guesses.
There are a variety of reasons why families do not report the deaths of people like Ms Kamara to a national registry, none of them complex. The registrar’s office may be far away and they cannot afford transportation costs, find the time to get there, or pay the nominal fee for the death certificate. They may have never even heard of the practice; the state is very little present in their lives. The dead are buried behind their homes or in small village plots, as Mrs. Kamara was; the local chief can then make a note in a register, the contents of which never leave the village. Sierra Leonean hospitals also do not automatically share their death records.
Sierra Leone is no anomaly. The collection of vital statistics in the developing world is weak. While progress has been made in recent years in birth registration (which is increasingly linked to access to education and social benefits), nearly half of the people who die each year in the world are not saved.
“There is no incentive for death registration,” said Prabhat Jha, who heads 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 strengthen a government willing to ground its policies in evidence and hard facts.
The topic of recording vital statistics is not glamorous, but it is critically important to understanding public health and socio-economic inequalities. Covid-19 has brought new attention to the topic. The debate over how many people have died from coronavirus and who they were has turned political, and in countries like India, falling death tolls have served the agenda of national governments in hopes of downplaying the role failing pandemic policies.
It’s important that we know not just how many people died, but who they were and when they died, said Stephen MacFeely, director of data and analytics for the World Health Organization. “As we come out of the eye of the storm, that’s when you talk about learning lessons.”
There is, for example, fierce debate among epidemiologists over whether Africans are dying of Covid-19 at the same rate as others around the world and, if they are not, what might be causing them. protect.
When countries don’t know who died or how, it complicates efforts to reduce preventable deaths. The government of Sierra Leone 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 be killed there each year by malaria, typhoid, car accidents, cancer, AIDS and childbirth. These models are built on global estimates and rely on dozens of individual studies and research projects, which can do a fairly good job of estimating the big picture, but are sometimes much less accurate at the level national. As Dr. Jha explains, malaria data 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 own data, not 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 models can be drastically wrong. “When you count the dead, you just get information that you didn’t expect,” Dr Jha said.
The first COMSA study looked at the households of 343,000 people in 2018 and 2019, of whom 8,374 died. The verbal autopsies produced findings so startling that Dr. Rashid Ansumana, the project’s co-principal investigator, refused to believe them for months, until the revelations were checked and double-checked in various ways.
“I was convinced by facts and evidence,” said Dr Ansumana, Dean of the Community Health College at Njala University. “And now I can convince anyone: the data is impressive.”
The first big surprise concerns malaria. Research has shown it to be the biggest killer of adults in Sierra Leone. Dr Ansumana said that in medical school he was taught that malaria kills children under the age of 5, but people who survive childhood have immunity that prevents repeated infections of the malaria to cost them their lives.
Virtually everyone working in health care in Sierra Leone believed him, he said. In fact, the plotted data showed that malaria deaths formed a U-shaped curve, with very high numbers in young children and lower numbers in young adults; the numbers then rose again among people over 45.
The second shock concerned maternal mortality. The study found that 510 out of 100,000 women die in childbirth – an incredibly high rate, but still only half of what UN agencies have reported for Sierra Leone. The finding was a relief for the government, Dr Ansumana said, as it showed that the resources spent on making childbirth safer for women and babies are paying off.
Now a second round of the national inquiry is underway, seeking to shed light on, among other things, the health impact of Covid-19.
To secure this kind of data without having to go door-to-door, Sierra Leone is working on reforms to its civil registration system and is one of many countries trying to find a way to ensure that more deaths are counted.
Many of these fixes are simple and inexpensive, said Jennifer Ellis, who leads a program called Data for Health, run by Bloomberg Philanthropies, which aims to boost health data collection in low- and middle-income countries. .
It starts with reviewing an existing death certificate to collect usable information about who died and why, and training doctors to know why a specific cause of death matters (i.e. , for example, why it is important that a death be recorded as “pancreatic cancer” as opposed to “abdominal pain”).
“You have to change the way data flows,” she said, because it may be collected by a national interior ministry and not shared with a health ministry. Data needs to be digitized, so it doesn’t just rot in the ledgers. It should be easy for people to go somewhere to register a death, and free of charge.
Another step is the systematic collection of verbal autopsies for all those who die outside of a health care 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 about each death.
Scanning is expensive, Dr. Ellis said, but the other steps cost very little. Less than 5% of deaths in Zambia included a cause registered when Data for Health joined the government in 2015; by 2020, that figure had risen to 34%. Peru introduced a digitized cause of death reporting system that now makes death information available in real time; because it had strong and readily available data, it reported some of the highest Covid death rates in Latin America.
The information collected by the new death registration systems was quickly translated into health policies. When improved cause-of-death collection revealed that road accidents were among the leading causes of death in Colombia, his government moved quickly to introduce safety protections in the worst-affected areas. In India, the recorded number of people dying from snakebites exceeded the WHO estimate for the whole world; the antivenom was made available at more primary care centers in heavily affected areas.
But while many countries are eager to turn what they learn from death statistics into policy, others are reluctant. “I’m not sure all governments really understand the power of data – and let’s face it, a lot of governments probably don’t want to measure it either,” said the WHO’s MacFeely. Some see the higher Covid death toll as an indictment of their responses to the pandemic, he said.
Yet, he said, the WHO encourages countries to treat vital statistics data as they do for other forms of infrastructure, such as gas systems or electricity grids.
“It’s part of running a modern country,” he said.