Door-to-door efforts to find out who died helping low-income countries support life

FUNKOYA, Sierra Leone – Augustine Alpha gently begins. “Who lives in this house?” he asked the young man who had just come in from the field to answer his question.

Your name? Grow old? Religion? Marital status? What year did you drop out of school? Do you own a bicycle? Mr. Alpha pasted the young man’s answer into the laptop that rested on his skinny knee.

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

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

Mr. Alpha expressed sympathy, asked her name – it was Mabinti Kamara – then rushed in: Is she sick? How long? Fever? Up and down, or steady? Vomiting? Diarrhea? Shock? Has she seen the doctor? Get medicine? Have pain? Where is the pain, and how long does it last?

Her son Kamara was quiet at first but quickly became hooked as he recounted the story of the final weeks of his mother’s life, describing fruitless trips to the local clinic. Alpha continued until all the details were entered into the software of the public health survey called the National Mortality Monitor for Action, or COMSA. He then closed his laptop, stuck a sticker on the wooden shutters of the front window that marked the house Kamara had surveyed, repeated his condolences, and moved on to the next house. .

In this way, within a few days, Mr. Alpha and three colleagues will gather detailed information on every death that has taken place in the village of Funkoya since 2020, using a process called telephony speech autopsy. death. The data they collected was transferred to the project’s headquarters at the University of Njala, in the town of Bo, a few hundred kilometers to the east. There, a doctor reviews the symptoms, describes, and classifies each death by its cause.

This is an extremely laborious way of determining who died, and how, but it is essential here because only a quarter of all deaths in Sierra Leone are reported to the registry. of national importance and no deaths have been identified. Life expectancy here is just 54 years, and most people die from preventable or treatable causes. But since there is no data on people’s deaths, the Sierra Leonean government plans its health care programs and budgets based on models and predictions, which are ultimately just good guesses. best.

There are many reasons why families don’t report the deaths of people like Ms. Kamara to the national registry, none of which are complicated. The registrar’s office may be far away, and they cannot afford to pay the cost of transportation, or find the time to get there, or pay the nominal fee for the death certificate. It is possible that they have never even heard of the practice; a state of very little presence in their lives. The dead are buried behind their homes or in small plots of land in the village, like Mrs. Kamara; The local chief can then make notes in a ledger, the contents of which are never carried out of the village. Hospitals in Sierra Leonean also do not automatically share their death records.

Sierra Leone is not an unusual thing. The collection of vital statistics around the developing world is weak. Although much progress has been made in recent years in terms of birth registration (increasingly tied to access to education and social benefits), almost half of all deaths worldwide each year their deaths are not recorded.

“There is no incentive to register a death,” said Prabhat Jha, head of the Center for Global Health Research in Toronto. He pioneered death-counting efforts two decades ago in India; currently implemented in Sierra Leone, one of the world’s poorest countries, has shown that this model will work anywhere, and has helped spur a government eager to put its policies in place. Evidence-based roots and hard facts.

The topic of static registration is neither important nor flashy, but it is vitally important to understand public health and socioeconomic inequality. Covid-19 has brought new attention to this topic. Debate over how many people have died from coronavirus, and who they are, has become political, and in countries like India, lower death tolls have served the agendas of national governments. hope to downplay the role of failed pandemic policies.

It’s important that we not only know how many people die, but who and when they die, said Stephen MacFeely, director of data and analytics for the World Health Organization. “As we step out of the eye of the storm, this is where you talk about learning the lessons.”

For example, there is a fierce debate among epidemiologists about Are Africans dying from Covid-19 at the same rate? like people in other parts of the world, and if they aren’t, about what might be protecting them.

When countries don’t know who died or how, it complicates efforts to reduce preventable deaths. The government of Sierra Leone allocates its budget, like many developing countries, in part based on models provided by UNICEF, WHO, the World Bank and other multilateral agencies, which predict the number of people who will die there every year from malaria, typhoid, car accidents, cancer, AIDS and childbirth. These models, built on global estimates and based on dozens of studies and individual research projects, can do a good job of estimating the bigger picture but are sometimes less precise. at the national level. As Dr Jha explains, malaria data coming 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 on a North American university or even the WHO Geneva office,” he said.

Information gathered through this careful door-to-door work has shown that models can be seriously flawed. “When you count the dead, you just get information you didn’t expect,” says Dr. Jha.

The first COMSA study looked at households with 343,000 people in 2018 and 2019, of which 8,374 people died. Verbal autopsies produced such surprising discoveries that Dr Rashid Ansumana, the project’s co-investigator, refused to believe them for months, until the findings were confirmed. tested and retested in a number of different ways.

“I am convinced with the facts and evidence,” said Dr Ansumana, dean of the school of public health at the University of Njala. “And now I can convince anyone: Data is amazing.”

The first big surprise involved malaria. Research shows it is the biggest killer in Sierra Leone. Dr Ansumana says that in medical school he was taught that malaria kills children under the age of 5, but that childhood survivors have immunity that prevents repeated malaria infections take away their lives.

Pretty much everyone who works in healthcare in Sierra Leone believes that, he said. In fact, the graph data shows that malaria deaths form a U-shaped curve, with very high numbers in young children and lower in young people; this number then rose again in people over 45 years old.

The second shock involves the death of the mother. The study found that 510 out of 100,000 women die in childbirth – a staggeringly high rate, but still half what UN agencies have reported for Sierra Leone. The finding is a relief for the government, because it shows that the resources poured into making childbirth safer for women and babies are paying off, said Dr Ansumana. .

Now a second round of a national survey is underway, seeking to shed light, among other things, on the health impact of Covid-19.

To secure this kind of data without having to go from house to house, Sierra Leone is undertaking civil registry reform and is one of many countries trying to find ways to ensure that the death toll is counted. more than.

Many of these fixes are simple and don’t cost much, said Jennifer Ellis, head of a program called Data for Health, run by Bloomberg Philanthropies.

It started with an overhaul of an existing death certificate to gather useful information about the person who died and whyand training physicians to be aware of why a specific cause of death is important (e.g. why a death is listed as “pancreatic cancer” instead of “abdominal pain”) is important. important.

“You need to change the way data is circulated, because it can be collected by the national interior ministry and not shared with the health ministry,” she said. The data should be digitized, so it’s not just in the ledgers. It should be easy for everyone to go somewhere to register a death, and it’s free.

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

Ms. Ellis said that digitization is expensive, but the other steps cost very little. Less than 5 percent of deaths in Zambia include the cause recorded when there was government-linked Health Data there in 2015; By 2020, that number has grown to 34%. Peru introduced a digitized cause of death reporting system that provides real-time mortality information; because it has solid and rapidly accessible data, it has reported some of the highest Covid mortality rates in Latin America.

Information captured by new death registration systems was quickly translated into health policies. As improved cause-of-death collection revealed that road accidents are one of the leading causes of death in Colombia, the government quickly introduced safety safeguards in areas where the accident occurred. hardest hit areas. In India, the number of recorded deaths from snakebites has exceeded WHO estimates for the whole world; antivenom is already being offered in more primary care centers in hard-hit areas.

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

However, he said, WHO is encouraging countries to process important statistical data as they implement other forms of infrastructure, such as gas systems or electricity grids.

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

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