Millions of people die each year, and the World Health Organization reported in 2017 that in nearly half of these cases, no cause of death is ever recorded.
Now, two Yale School of Public Health alumni have joined forces with a current student to address the issue. Their goal? To improve documentation of deaths worldwide to better assess the burden of disease and to allocate health resources accordingly.
“Gathering data and information on causes and numbers of deaths across age groups, locations, races, and genders will enable us to measure the burden of disease, allocate health resources at national and regional levels, generate evidence-based health policies, and monitor and evaluate health interventions,” said Ehsan Abualanain, MPH ’22 (global health), one of the leaders of the initiative.
Abualanain and Ahmad Saleh, MPH ’22 (epidemiology/biostatistics), and current YSPH student Madison Novosel, MPH ’23 (chronic disease epidemiology), have taken what was originally a school research project and turned it into a non-governmental organization (NGO) called MakeDeathsCount (MDC).
The organization trains people around the world in conducting “verbal autopsies.” The practice involves canvassing people in conflict-torn and low- and middle-income countries – from door to door or from tent to tent in some instances – following a set list of questions in order to find out from relatives, friends, and loved ones when and how a person died. MDC then collects the data and analyzes it.
This need is especially important in countries where there is little to no recordkeeping on mortality, or where ministries of health are few and far between and often too far for low-income families to be able to contact them about deaths.
We quickly realized that the lack of death registration was widespread globally. And so, we saw a role for an organization to provide consultation work in developing verbal autopsy projects with the goal of delivering actionable cause of death data for local decision-makers, and not purely for the sake of research. No one was doing this work the way we envisioned it.
MakeDeathsCount co-founder Ahmad Saleh, MPH '22
“Knowing the cause of death has a direct effect on health equity and justice by capturing the needs of the poorest and most vulnerable groups,” Abualanain said. “Facility-based mortality data suffers from many setbacks, especially in low- to middle-income countries. One of the main problems of health facility mortality data is that it captures the deaths of only those segments of society that have access to health care settings. This fact provides an underrepresented mortality data for some segments of the society that are already suffering due to problems in health care access and care.”
Saleh and Abualanain were working on mortality surveillance in March 2022 in the lab of Kaveh Khoshnood, associate professor of epidemiology (microbial diseases). Khoshnood suggested that they look into developing a verbal autopsy training project in war-ravaged northwestern Syria, after he was approached by a colleague working for a Syrian NGO.
“He raised the issue of the number of Syrians who died in the conflict,” Khoshnood said. “We collaborated on a CDC grant to establish mortality surveillance in northwestern Syria. When thinking of a conflict zone, we don’t know the causes of a lot of deaths.”
To fund Saleh and Abualanain’s verbal autopsy training initiative, Khoshnood learned that the Bloomberg Foundation has been involved in many African countries. The foundation doesn’t fund university research, but it does fund NGOs.
Saleh, who is currently in his final year of study for his medical degree at the SUNY Downstate Medical Sciences University in Brooklyn, brought the idea of forming an NGO to Abualanain. Shortly after, they teamed with HIS-Unit, a Syrian NGO based in Turkey and operating in northern Syria; and with another NGO, Physicians Across Continents-Turkey, which helped supply community health workers for the project, to apply for a $150,000 Bloomberg Vital Strategy grant, which they were awarded. MDC received $4,000 of that money to cover travel funds to bring Saleh and Abualanain to Turkey to give verbal autopsy training. In September, they went to Gaziantep, Turkey, about 60 miles from the northwest Syrian border, to give VA training to HIS-Unit and develop the project.
Saleh and Abualanain brought Novosel on board in August and applied to Yale’s Tsai CITY’s Accelerator program, where they received guidance on how to set up their NGO. Tsai CITY paired them with mentors and advisors to guide MDC from decisions on hiring practices to effective partnership training. The program also provided weekly didactics on various topics helpful for startups, such as fundraising, legal considerations, operations, and development of mission and values.
“As this is our very first foray into the world of entrepreneurship, we found our experience in the accelerator to be immensely valuable,” Saleh said. “We even won the accelerator’s pitch competition out of a total of 16 teams that competed!”
While the trio have been working on training and data analysis in Syria, they have come to realize the lack of mortality records is a much larger international problem.
“We quickly realized that the lack of death registration was widespread globally,” Saleh said. “And so, we saw a role for an organization to provide consultation work in developing verbal autopsy projects with the goal of delivering actionable cause of death data for local decision-makers, and not purely for the sake of research. No one was doing this work the way we envisioned it.”
The practice of verbal autopsy (VA) has been used since the 1950s, originally in Asian and African countries. By the 1990s, experts began to develop several VA standards. The WHO published three standard age-based VA questionnaires in 2007 and has updated them several times since. Saleh said what MDC is doing is taking various VA methods and creating one standard.
“We did not develop [VA], but we have standardized its practice and implementation,” he explained. “There are different organizations and institutions that provide resources on VA, many of which are outdated and far too complicated for self-implementation. We essentially spent countless hours aggregating these resources and adapting them with our own experiences to provide a standardized and succinct consultation in VA implementation.”
So far, Abualanain said, their Syrian partners have completed more than 300 interviews, just over halfway past their target of 600 interviews in the pilot phase. And MDC’s goals are even more ambitious, as it establishes ties with NGOs in other countries. Future plans include creating and collaborating on VA projects in Iraq, Colombia, and India.
India, with 1.4 billion people, is a daunting task, but Novosel said MDC is already laying foundational work in that country. To that effect, they have connected with one of India’s national experts in verbal and social autopsy. For MDC, it’s one small step at a time – one target region, then hopefully expansion on a larger scale.
“To be clear, our goal is not, as an organization, to be directly responsible for collecting [cause-of-death] data nationwide in the countries we work in,” she said. “Rather, we want to exist as a supportive role for our partners to develop these projects on a small scale with the hopes that they become absorbed and taken over by their ministries of health. We want to serve as a stepping stone for an eventual complete central registry and vital statistics (CRVS) system in our partnering countries.”