According to Dr Samira Asma, assistant director-general for data and analytics at the World Health Organization, six out of every ten deaths go unregistered globally. In Africa, this figure climbs to nine out of ten.
Data has been hailed as the lifeblood of public health, a statement that has only been confirmed by the pandemic, but billions are at risk of missing out on data-driven improvements to health care because of poor infrastructure. Speaking at the ODI Summit 2021, Asma outlined the barriers that need to be overcome before data can support a “healthier, more equitable world.”
“As we head out of Covid we have a tremendous opportunity to improve health outcomes in the global south,” said Asma. “But doing so requires governments, public health bodies and the private sector to drastically improve the quality of data being collected, the rate at which it is being shared and the diligence with which it is being applied.”
As the gaping hole in global death registrations reveals, the quality of data being collected on vital statistics (births, deaths and causes of death) is patchy to say the least. “Data is more than numbers on a page, it represents a person from cradle to grave,” said Asma. “More than a billion people are invisible to us because of a lack of data on births and deaths, which leaves them vulnerable.”
The extent to which people can slip through the cracks has been highlighted by the pandemic. Asma explained that there have been between nine and 12 million excess deaths globally so far this year, only five million of which have been officially registered. This dearth of information is holding policymakers back from effectively combating preventable deaths. “When we don’t count, we don’t know, and when we don’t know, we don’t know where to invest - and inequities deepen,” she said.
These inequities have been laid bare by the global vaccine rollout. According to Asma, four billion people remain unvaccinated around the world, more than half of whom live in low and middle-income countries. “Yet, even these figures are only as good as the health information systems that report them,” she admitted.
The WHO hopes that its SCORE for Health Data Technical Package can go some way toward plugging this gap. The framework assists member states in strengthening internal data systems and capacity to monitor progress towards the UN’s Sustainable Development Goals and other national and subnational health priorities. The SCORE acronym covers interventions that can help to: Survey population and health risks; Count births and deaths; Optimise health service data; Review progress and performance; and Enable data use for policy and action. The framework has already been used to positive effect in Rwanda, Zambia and South Africa.
The success of such frameworks depends upon international collaboration. As the rapid spread of Covid has highlighted, health crises pay little attention to borders. Despite this, data sharing between countries, organisations and public bodies remains suboptimal. “We’re not sharing data,” said Asma. “Health data must be a public good, and for that to happen data has to be liberated – by which I mean providing fundamental access to data to drive and improve the quality of care and the performance of health policy.”
Details were vague, but Asma revealed to the ODI Summit audience that the WHO plans to launch a World Health Data Hub. It is hoped that the hub will facilitate greater data sharing between key players in global health. “We need a modern end-to-end data enterprise that is accessible to all,” said Asma. “The hub is a data lake that can be accessed by all, with various checks and balances. We will be transparent about the data that flows in and out.”
Transparency is vital in a world that is increasingly conscious about the way data is being harvested, stored and shared. This is particularly true of health data, the most personal of all data. Asma said: “It’s important to protect individual privacy, and we have technology at our disposal that can help us to make data open while ensuring that we are respecting human rights and the privacy of individuals through good governance.”
Private sector involvement could set alarm bells ringing - not least because the principles governing the supply of data to the hub “have yet to be properly articulated,” according to Asma - but the big data horded by Silicon Valley tech giants is seen as key to the platform’s success. “We need big data to do projections and forecasting, and we don’t have a lot of time to collect it. It is extremely important that we reach a consensus between the public and private sector,” said Asma.
Platforms such as the World Health Data Hub may serve to improve access to quality data, but there is no guarantee it will lead to data being used efficiently. “Too often, data is collected but sits unanalysed for one or two years,” said Asma. “There’s no point in quality, accessible data if it isn’t used in real time to drive health improvements and improve policies. Mechanisms for tracking baselines, targets and trajectories through real-time data will enable us to know what policies are needed for certain risk factors and diseases.”
This is where technology is key. Asma cited the vital role played by geographic information systems (GIS) in preventing death by snake bite as an example of the role that technology can play. “Venomous snake bites take around 138,000 lives annually,” she said. “GIS is being used to catalogue venomous snakes and locate health facilities with appropriate antivenom to connect bite victims with the right care in a timeframe that could save their life.”
Quality, accessible data being applied in real-time - this is the dynamic that Asma believes could revolutionise the provision of health care worldwide. “Without data, we’re truly shooting in the dark,” said Asma. “We want the number of people living healthier, longer lives to grow, but this cannot be achieved in isolation. We have to stand together in unison towards a common vision for a better future.”
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