In the United States we take for granted that government agencies will record the vital events in our lives: births, marriages, deaths. But throughout the developing world, systematic records of vital events are still incomplete or almost nonexistent.
Epidemiologist Philip Setel and his colleagues call this failure to register vital events a “scandal of invisibility.” An unregistered person can be denied access to government services and basic legal rights. For example, a woman who doesn’t have documentation proving her marriage may not be able to inherit her husband’s property after he dies.
Worse, Setel says, we don’t know what we don’t know about uncounted people’s lives. “If they are forced into child labor or service as child soldiers, if they’re lost in a natural disaster or subject to human trafficking — who’s going to know? No one. No one who will be in a position to help them.”
Setel and an international group of scholars wrote about the problem in a series of papers published in Lancet. The papers emphasize one of the crucial elements missing from developing countries’ records: death records stating a cause of death. Twenty-five percent of people worldwide live in countries that don’t report cause-of-death data to the World Health Organization (WHO). Another fifty percent live in countries that report data WHO classifies as low-quality or limited-use.
Without good data, it’s hard to effectively fight world health crises. “The tendency right now is toward focused perspectives on different diseases,” Setel says. “We have the Global Fund to Fight AIDS, TB, and Malaria. We have the President’s Emergency Plan for AIDS Relief.” The different groups have a shared need for cause-of-death data, but so far there’s been little collaboration among aid organizations and governments to start registering deaths.
One of the exceptions is a method Setel and his colleagues have been working on called Sample Vital Registration with Verbal Autopsy (SAVVY). The method has interviewers use a set of WHO standard forms to talk to people from a representative sample about deaths in their households. Doctors then assign causes of death using the interview data.
Last fall Mozambique’s National Statistics Institute started using elements of SAVVY in conjunction with its 2007 national census. The institute will release preliminary results of the survey in summer 2008.
Setel hopes Mozambique’s example will show that methods exist to help countries with very poor records to start registering vital events. “The regions that have no functional registration systems can record events for at least a representative sample of the population,” he says. “Over time, these sample systems can expand. The technological and administrative tools are at hand to do this.” The missing ingredients, he says, are money and political will.
Philip Setel is Deputy Director of MEASURE Evaluation, a thirty-million-dollar program funded by the U.S. Agency for International Development. Much of the data for the “Who Counts?” Lancet papers came from the U.S. Census Bureau and WHO’s Health Metrics Network.