For the first time, public health officials and researchers around the globe will have access to accurate and timely data about the causes of death in children under age five in South Asia and sub-Saharan Africa. The data release is part of an ambitious and comprehensive initiative called Child Health and Mortality Prevention Surveillance (CHAMPS) Network that is supported by a coalition of partners including The Task Force for Global Health.
“Usually, people take years to collect the data and gradually release papers,” explains Patrick Caneer, senior manager for information technology at the Public Health Informatics Institute (PHII), the Task Force program that consolidates and manages CHAMPS data. “One of the biggest things that’s different about CHAMPS is that these data are coming in every day. That’s unprecedented.”
Every day around the world, more than 15,000 children under the age of five die—many of them from preventable diseases. CHAMPS believes that knowing the causes of death can help inform interventions to reduce child mortality in developing nations.
CHAMPS executive director, Robert Breiman, MD, says CHAMPS is “unique at so many levels.” “It’s what has been needed all along, which has been to go beyond interviewing families and getting death certificates, and collect very precise information about what is responsible for child deaths.”
Along with The Task Force, The Centers for Disease Control and Prevention (CDC) and the Emory Global Health Institute are also partners on the project, which is funded by the Bill & Melinda Gates Foundation.
How Data Travel from Site to Dashboard
Since 2016, CHAMPS has been collecting detailed information on the causes of child deaths in seven sites—Bangladesh, Ethiopia, Kenya, Mali, Mozambique, South Africa, and Sierra Leone. The program has been able to gather extensive data on child deaths, largely due to its advance fieldwork.
“In most of these sites, there has been at least a year of working with people in the community. Each CHAMPS site has a team that does social-behavioral science and community engagement. They work with parents and community leaders, religious leaders, and political leaders,” Breiman says.
Within 24 hours of a child’s death, a team of public health specialists, pathologists, and microbiologists begins collecting data. They gather whatever medical records are available for the child, and they conduct a verbal autopsy, asking the family questions about the child’s health prior to his or her death.
Rather than do a true autopsy, which is invasive and can be upsetting to the family, CHAMPS uses a procedure called minimally invasive tissue sampling (MITS). “We collect small biopsies or pieces of tissue from several organs, as well as blood and some other clinical specimens,” says Dianna Blau, DVM, PhD, CHAMPS laboratory and diagnostics lead. “And then all of those undergo an extensive array of tests, primarily looking for infectious causes of death, but we can also assess malnutrition in a child.”
Sometimes the cause is multifaceted. For example, a child who appears to have died of malnutrition may have an underlying case of HIV. The detailed nature of CHAMPS data collection allows health officials to drill down into the cause of death in a way that wasn’t previously possible.
Pathologists, both in country and at the CDC, analyze the tissue and fluid samples. Then a panel of clinicians, microbiologists, epidemiologists, and pathologists render their opinion on the cause of death. “They discuss whether the death was preventable, and if so, what actions can we put into place to prevent it in the future?” Blau says.
Once the data are collected, they’re handed off to The Task Force’s informatics team to analyze and make usable. The team uploads the most recent numbers to the CHAMPS dashboard, breaking them down by location, date of death, gender, and age (stillbirth, newborn, infant and child). The information is also sent to local health officials at each site.
Looking for Trends
A few causes of death have emerged as significant from the data collected so far—including birth complications and birth defects in newborns, and high blood pressure in mothers. However, Caneer says it’s far too early to draw any real conclusions from the numbers. As of now, complete data have been collected on only a few hundred cases.
“This is live surveillance. It’s kind of like tracking the weather,” he says. “As the case count rises and we expand to other places, that should begin to shine the light on possible trends.”
Even in these early stages of surveillance, the CHAMPS team has made a few discoveries that they’ve been able to turn into evidence-based decisions. In one case, a mother gave birth to twins—one of them stillborn. A verbal autopsy and tests revealed that the deceased child was infected with syphilis. When the CHAMPS team went back to the family, they discovered that both the mother and the other twin were also infected, even though they didn’t show symptoms. The clinic that had cared for the mother during pregnancy didn’t test her for syphilis because the test was out of stock.
Through CHAMPS’ efforts, both the mother and living twin received treatment. “That didn’t just affect the child who died. It affected the whole family. And if CHAMPS hadn’t intervened, they would have been very sick,” says the program’s public health partnerships associate, Andie Tucker, MDP. Members of the supply chain for that clinic also learned that they needed to better maintain their stock of tests.
Turning Research Into Action
The dashboard also provides researchers around the world with the data they need to design their own interventions for reducing children’s deaths. “It’s possible for researchers to ask their own questions, or maybe come up with their own innovations that can be tested with our data set or our specimens,” Breiman says.
The plan is to ultimately expand CHAMPS into 20 sites over a 20-year period, and have the dashboard provide insights based on a much bigger sample population. The real impact will come from converting that information into global recommendations that can help prevent deaths of children in some of the poorest parts of the world. “A lot of the real payoff won’t come for 10 years or more,” Caneer says.