Jeremy Youde
Reliable and accurate data are supposed to be the bedrock of the global health governance system. Unfortunately, the coronavirus pandemic is demonstrating just how difficult it is to collect such information, and why this failure has so many consequences for national and international responses to infectious disease outbreaks.
Let’s use North Korea as an example. How many cases of COVID-19 have there been in the so-called Hermit Kingdom? If you ask North Korean government officials, the answer prior to the middle of May 2022 was zero—despite reports in the South Korean press that nearly 200 North Korean soldiers had died of the disease as early as March 2020. Since Kim Jong Un confirmed the first cases of the disease in May 2022, though, the estimated number of cases varies wildly. North Korean state media have reported nearly 1.5 million cases of “fever,” with outside experts believing that a large portion of those are COVID-19. The Coronavirus Resource Center website puts the figure of COVID-19 cases significantly lower, with 56 officially reported cases and one death, while the World Health Organization, or WHO, reports no official cases of COVID-19 in the country.
It might be easy to dismiss North Korea as an anomaly. The North Korean government is hardly known for its openness and transparency with the international community, and its officials have been known to stretch the truth in the past. Part of the problem for North Korea is that its health care system is incredibly fragile, with severe shortages of medicine and a lack of personnel. North Korea also has very little coronavirus testing capacity, no vaccines and a reputation for secrecy when it comes to sharing health data. Without accurate data, it is impossible for North Korean—or international—officials to devise an effective and robust response to the outbreak.
In many ways, though, North Korea is not necessarily an anomaly when it comes to COVID-19 data. The Centers for Disease Control and Prevention, or CDC, reports that the U.S. has had more than 82 million cases of COVID-19. Despite claims that the U.S. government is overcounting COVID-19 cases and deaths—an argument that has been thoroughly debunked—the reality is that the country severely undercounts cases. The Institute for Health Metrics and Evaluation suggests that only seven out of every 100 cases in the U.S. are officially recorded due to a combination of the politicization of COVID-19 diagnoses, the increase in home COVID-19 testing results not being reported to health authorities and changes in how the CDC calculates risk levels. The resulting undercount complicates the government’s efforts to effectively deploy resources to combat the outbreak.
Even with the proliferation of COVID-19 dashboards, U.S. researchers have battled with inconsistent reporting, a lack of data transparency and incomplete demographic information. And if a technologically advanced country with developed health infrastructure like the U.S. is undercounting cases, it stands to reason that countries with less-developed health and data-collection infrastructure are doing so as well.
These problems are not new, though they may have become more acute amid the global pandemic. And they have had a significant impact on controlling the pandemic, as any sort of coordinated international response to a disease outbreak requires that we know where an outbreak is occurring, what is causing it and how many people are falling ill.
The crucial role of accurate data is part of what inspired the wholesale revision in 2005 to the International Health Regulations, or IHR—an international legal agreement that traces its origins back to the late 19th century and efforts to stop cholera from spreading as more people and goods crossed international borders. Prior to the overhaul, the regulations relied on states to report outbreaks of specific diseases enumerated in the IHR to international officials, with the hope that early reporting would lead to rapid responses.
Unfortunately, few governments felt an incentive to report disease outbreaks within their borders. They feared—often rightly so—that other countries would retaliate against them or their citizens, imposing trade and travel restrictions. And because the IHR only allowed the WHO to act on information that it received from official sources, the organization was powerless to act if a government did not want to share such information about itself.
The shortcomings of that approach were drawn into sharp contrast by the SARS outbreak in 2002 and 2003, which, as a new disease, was not specifically listed in the IHR and therefore was not covered by it. As a result, Chinese government officials could claim that everything was under control, despite the fact that the disease was spreading rapidly throughout major cities and government officials were hiding patients from WHO officials—and the WHO technically had little recourse. Chinese government officials later admitted that they were not well-prepared for the outbreak, and the health minister and mayor of Beijing were fired for their inaction.
This led to three significant changes to the IHR in an effort to improve global health governance. First, instead of specifying particular diseases, the revised IHR take an “all-risks” approach: Any disease that poses a threat of serious international spread needs to be reported to the WHO. Second, countries are required to establish national surveillance systems to proactively monitor for outbreaks—and share any such information with the WHO within 24 hours. Finally, the WHO can now act on reports from nongovernmental and media sources.
Moreover, to allay fears that other states would retaliate against countries reporting an outbreak, the updated IHR also requires signatory states not to take punitive measures against reporting states.
Taken together, the revised IHR was designed to provide the foundation for collecting and sharing accurate data about infectious disease outbreaks. In practice, though, it has not lived up to its promises. Governments have continued to impose strict measures against states that have reported disease outbreaks. During the 2009 H1N1 influenza outbreak, nearly 50 governments imposed trade and travel restrictions beyond those authorized by the WHO, and during the Ebola outbreak in 2014-2016, more than 30 states introduced such restrictions against Guinea, Liberia and Sierra Leone. Despite its worldwide ubiquity, the coronavirus pandemic has prompted similar sorts of retaliatory measures. The irony, of course, is that such restrictions only make it less likely that governments will share necessary information willingly, thus imperiling global health.
The COVID-19 experience also points to the need for better standardization of data. Even if all countries are collecting and sharing data, those data need to be comparable so that officials can truly understand how outbreaks in different countries stack up against one another. It is difficult to assess the true extent of North Korea’s COVID-19 outbreak, for instance, if it is describing most of the suspected cases as “fever”—regardless of whether that is being done out of a desire to hide the true extent of COVID-19’s spread or an inability to test. Similarly, because what qualified as a “severe” case of COVID-19 varied from country to country in the early days, the international community’s ability to devise a unified strategy was slowed down.
Finally, the coronavirus pandemic highlights the need to strengthen national systems for keeping vital statistics—those of births and deaths—around the world. Without reliable vital statistics systems, it is near-impossible to assess just how widespread an outbreak is. And the attention paid to excess deaths as a measure of COVID-19 infections, given the lack of accurate testing, has highlighted how variable such national-level systems for recording births and deaths are. Even before COVID-19, the WHO estimated that two-thirds of global deaths are not formally recorded. A new report from the WHO earlier this month posited that nearly 15 million people had died of COVID-19—three times the number officially reported by governments.
Fighting COVID-19 and preparing for the next pandemic—which is widely recognized to be inevitable—require accurate data, and the historical record shows what happens when we lack this information. Despite efforts to improve such systems, however, the weak link will remain whether or not governments are able and willing to collect and share accurate data and maintain robust surveillance systems. Data is crucial to prevent the spread of disease, but unless governments are willing to share it transparently, it is insufficient.
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