Push for Better Death Data Bears Fruit: Largest Ever Global Dataset of Individual Deaths Released

Jocalyn Clark @jocalynclark comments on the INDEPTH Network’s release of the largest ever dataset of individual deaths in Africa and Southeast Asia, and the importance of equality in health data.

Enthusiasts of global health research will have observed various battles over the years about ‘the best’ health data and estimates. On one side are sophisticated mathematical models arising from advanced statistical techniques but often patchy data, including the massive Global Burden of Disease (GBD) studies.

On another side are on-the-ground collections of individual deaths, using techniques such as verbal autopsy where data collectors actually interview the family members of the deceased and determine cause of death. In 2010 PLOS Medicine devoted a Collection (which I commissioned) to the global health estimates debate, much of which seems highly relevant four years later.

Both types of health information generate insights into the patterns and magnitude of different diseases around the world. And in truth these ‘sides’ should not be pitted against each other – as their estimates and data complement each other. For death data in particular, there appear to be shared aims to generate better quality and more accurate information about what people die from, not least because it helps us determine which interventions and investments are needed to prevent those deaths. Nevertheless, how and by whom global mortality estimates are generated can often inspire anxiety and antagonism.

What matters more than competition when it comes to death is what Peter Byass has described as the unequal world of health data, demonstrating that ‘poverty in material terms is inextricably linked with poverty of data.’ Simply put there is far less health information available on poor countries than on rich ones. Even fundamental birth registration is strongly linked to a country’s economic status (42 poorest countries of 193 worldwide had missing birth data in Byass’s analysis), leaving much of the world uncounted.

The gulf such poverty and inequity in data have created for global health makes the release last month of the largest ever dataset of individual deaths in Africa and Southeast Asia so significant.

Comprising more than 110,000 individual deaths and their causes across 13 countries including Ghana, South Africa, Kenya, Bangladesh and Vietnam, this new extraordinary publicly available dataset is derived from the health and demographic surveillances sites of the INDEPTH Network. Collected via verbal autopsy and verified, the data are the first meaningful community-based information about cause of death in countries where individual deaths are not recorded automatically by national governments. Some of the data dates to 1992, and collectively it represents more than a century of working time.

Analyses of these cause of deaths were published in a special issue of the open access journal Global Health Action, and funded by Wellcome Trust.

Totalling 21 papers, it’s a treasure trove of death data. Some findings in particular are worth summarising:  Under-five child mortality ranged 10-fold: from 15 per 1,000 in a Vietnamese site to 152 per 1,000 in one Kenyan site. Malaria mortality ranged from zero at one Bangladesh site to more than 2 per 1,000 in parts of Africa. The level of HIV/AIDS mortality was more than 300 times higher in some African sites than it was in Asia.

Across all the developing countries are consistently high rates of maternal and childhood mortality. Childhood drowning in Bangladesh and homicide among adult males in parts of Africa stand out as major areas for intervention and action. Mortality from non-communicable diseases, particularly in younger adulthood, is an emerging problem that accounts for a high proportion of deaths in Asian countries.

I can’t do justice to all the findings here, but enthusiastically encourage readers to see this as a common resource for global health, a major advance in properly counting and accounting for developing world deaths, and step forward in equalising the world of health data.

Competing interests: I currently serve as a member of the INDEPTH Network’s scientific advisory committee. I’m a former senior editor at PLOS Medicine.