How visible are the vulnerable in the data on coronavirus?

Every day we are surrounded by vast quantities of complex data on the coronavirus (Covid-19) pandemic – perhaps more data than we have ever seen before. At every turn we are being presented with information and figures – from statistical models of pandemic projections and charts showing health system capacity, to infection and testing rates. The most sobering number we are all hit with daily is the update on the number of deaths from Covid-19. Each figure is a person no longer with us and a family devastated. We are also seeing worrying data on the economic impact of the pandemic – for example, in the UK, the soaring number of people seeking support packages from the government and applying for universal credit.

This data matters because without it we don’t know who is affected and how, what help is needed, and whether that support is working. What’s more, comprehensive civil registration systems (that record every birth, death and marriage) have been shown to improve population health outcomes overall, irrespective of income and other health factors. So there are long-reaching benefits to getting foundational data right. For those most vulnerable, to understand the direct and indirect impacts of the virus, having this data is a lifeline.

The most vulnerable people are the most likely to be missing from the data

From DI’s experience of counting people and inclusive data, we know that the most vulnerable and poorest in society are the least likely to be counted and therefore most likely to be invisible in the current coronavirus pandemic. Missing from the statistical models, these people will be less likely to get the vital support they need, and the impact of the crisis on their lives will not be accounted for – even their deaths may go uncounted. While this issue is most significant in poorer countries, the most vulnerable are also often missing from data in wealthier countries that have more robust collection and reporting systems.

The figures of daily deaths from Covid-19 in the England and Wales only cover deaths that occur in hospitals, and we have seen controversy over those that occur in care homes going uncounted. It was only when the Office for National Statistics reported comprehensive data from the death registration system that we started to get a more accurate picture of the impact of Covid-19. And even then there are limitations. For example, as a result of data from the US showing the impact of Covid-19 to be greatest in certain racial and ethnic subgroups, we are now seeing calls for disaggregation of death data by ethnicity in the UK. Currently this information is only available from data collected in hospitals.

In some of the poorest countries your birth and death are unlikely to be counted at all

Global statistics on birth registration, especially for those living in poverty, are stark: one billion people cannot prove their legal identity; one quarter of all children under the age of five have no form of birth registration; half of the population of Africa is not registered at birth. And the data on coverage of death registration in Africa paints an even worse picture: only one in three deaths in this region is captured by official registration systems; just 18 of 54 countries record and report annual deaths; and only four countries have a level of death registration coverage and cause of death information that meets international standards.

Coronavirus makes the devastating impact of weak data infrastructure painfully clear

In the same way that, in general, weak health and economic infrastructures mean that the most vulnerable are more likely to be the hardest hit, weak data infrastructures will impede effective responses to the coronavirus pandemic. It does not have to be this way, however. DI has a track record of working with national and local governments that are keen to better understand the lives of the poorest people in order to better serve their populations; and working with these stakeholders, DI has helped develop strategic plans for data ecosystems that support service delivery.

We can fix this – and we have a duty to do so

From a data point of view, improved response to the coronavirus pandemic requires detailed, disaggregated data on populations to be able to target resources and understand the long-term impact the crisis has on the most vulnerable and poorest people. And this requires investment in sustainable foundational information systems. Civil registration, along with health and education information management, should embedded at the local level, with digital data captured in every school, health facility and registry office at the point of service delivery and then shared as usable information in the same locality. Governments and donors will need to adopt holistic and interoperable approaches to develop these data systems. DI’s recent analysis on digital civil registration and legal identity systems recommends that:

• National treasuries, supported by donors, need to make the long-term investments in digital civil registration systems
• National statistics offices should produce vital statistics on births, deaths and marriages directly from registration systems – even if those systems are incomplete, as the data can highlight underperforming areas and the process of production can develop the capacity needed to produce better statistics
• Monitoring statistics should be derived from national civil registration and identity management systems
• Pathways to sustainable, interconnected foundational data systems (civil registration, health and education) need to be prioritised by all those working to leave no one behind.

Efforts are already underway in some places. In recent years the international response from the UN’s Global Civil Registration and Vital Statistics Group, the Africa Programme on Accelerated Improvement of Civil Registration and Vital Statistics (APAI-CRVS), the Worlds Bank’s ID4D Initiative and the Canadian-led Centre of Excellence for Civil Registration and Vital Statistics Systems has stepped up to support national programmes that aim to improve foundational data. However, while there are lots of good intentions we are not yet achieving significant results.

The coronavirus pandemic is the biggest global health and economic challenge in recent history. In order to meet this challenge, we will need resilient data systems that form the foundation of inclusive, robust and trustworthy national statistics systems. Even if we don’t have the data we need right now, the impact of the pandemic is going to be felt for many years – so making this a priority will still have a huge benefit for the longer-term response to the crisis. Not doing so means choosing to miss out the most vulnerable and continuing to leave them behind.