Worldwide, 65% of deaths go uncounted – here's how to change that

It has been described as the most critical development failure of the past 30 years, and shows no sign of improving: many countries' systems for registering major life events like births and deaths are incomplete or absent.

In 2007, the Lancet described the situation as follows: “most people in Africa and Asia, and in many other regions, are born and die without leaving a trace in any legal record or official statistic”. A follow-up series in 2015 identified a continued lack of political will to improve the situation. Registration of major life events is fundamental to human security and development, but 65% of deaths and 35% of births remain unrecorded across the world.

Civil registration refers to the continuous recording all vital life events in a population (also including marriages and divorces). It brings benefits for everyone. It provides citizens with the legal documents that allow them to protect rights like identity, citizenship and property; enabling them to make claims for public goods such as housing, employment, health care and justice. It helps to protect people, especially the vulnerable, from harm and exploitation in times of disaster or conflict, as well as from human trafficking and child labour. And it ensures that countries' vital statistics are available for those that need to see them.

A health essential

Registering medical causes of deaths has also long been considered essential for the health of a population. The fact that more than half of all deaths worldwide go unregistered seriously limits the capacity of national health systems to deliver services that respond to the needs of their population. And poor countries are by far the worst affected: governments struggle to establish proper systems and donors often prefer to invest in interventions targeting specific health problems, such as vaccines, bed nets, clean birth kits and so forth.

Civil registration also plays an important role in helping development agencies monitor policies and programmes. Last month, the world agreed 17 goals for sustainable development to continue the Millennium Development Goals beyond the 2015 deadline. An aspirational vision of global health and development this may be, but it will fail those it seeks to service if its success is judged on indicators that countries don’t measure.

We therefore urgently need alternatives that can record vital health data. The most obvious option is verbal autopsy, which has already been used in more than 45 low and middle-income countries for more than two decades to determine the causes of death for people who die outside hospitals and health facilities and/or in places where registration practice is poor. It has been used in countries as diverse as Pakistan, Guatemala, Malaysia and Kenya, often to gather information about a specific condition, such as sickle cell anaemia, stillbirth or child mortality.

It involves trained fieldworkers interviewing final caregivers on the deceased’s medical signs and symptoms prior to death. This information is then interpreted to deduce the probable medical causes. Admittedly it cannot help with the problem of vital documentation, which is one of the reasons it should be seen as an interim measure, but it still has an important role to play.

Not only can it address the critical gaps in our knowledge on world health – Ebola incidence is a good example – it can also shed light on specific issues like exclusion from access to health systems. And contrary to what you might imagine, it doesn’t have to be very expensive to implement.

The international push

We’ve now reached the point where there is considerable momentum around scaling up verbal autopsies. The World Health Organization regularly publishes standard verbal-autopsy interviews to harmonise practice and allow cross-national comparisons. In 2012 it published a formal short verbal-autopsy template to encourage them to be used more widely, as well as using them to contribute to the likes of maternal mortality data.

Signs of change?Myimages - Micha

The use of verbal autopsy as part of civil registration was also promoted at a ministerial conference on civil registration in Asia in 2014, and at a similar event for Africa earlier this year. Meanwhile the latest development is automated interpretation of verbal autopsy data, which makes interpretations between different regions and countries fully consistent.

The University of Aberdeen is involved in these efforts by co-ordinating a new research initiative that aims to help exploit another opportunity presented by verbal autopsies: reconciling health data with information about the broader social circumstances that contribute to avoidable deaths.

Focused on South Africa, the work will develop new ways to classify deaths according to the local social circumstances that contribute to them; work with local communities to make the interpretations as accurate as possible; and embed these data and interpretations into national health systems. Like the rest of the efforts to improve recording of deaths through verbal autopsies, the hope is that by increasing the stock of knowledge about world health, we go some way to helping the people who suffer most from the lack of it.

Lucia receives funding from the Medical Research Council, the Economic and Social Research Council, the Wellcome Trust and DFID. She is affiliated with the Umea Centre for Global Health Research at Umea University in Sweden.