Disclosing International Infectious Disease Outbreaks to Protect Public Health

From the mid-nineteenth century on, nations have sought to create international practices to control the spread of infectious disease. International surveillance—the rapid reporting of disease outbreaks—was early recognized as a key to reducing deaths and illnesses. After several devastating cholera epidemics in the early 1800s, international sanitary conventions sought to harmonize variable national surveillance and quarantine laws. In 1918-1919, a devastating pandemic of influenza infected an estimated 500 million people worldwide, killing 50 to 100 million.

Since 1951, the International Health Regulations (IHR) of the World Health Organization (WHO) have governed international surveillance of infectious diseases among member countries. An arm of the United Nations, the WHO is governed by a World Health Assembly composed of representatives of the WHO member governments. Traditionally, International Health Regulations (IHR) required member governments to inform the WHO about cases of specified infectious diseases within set time periods and national governments controlled the flow of information on which disease surveillance was based. The stated purpose of the Regulations was to minimize the international spread of disease with minimal interference with trade and travel.

By the 1970s, however, the WHO surveillance system was moribund. Only plague, cholera, and yellow fever were subject to international reporting rules and member states routinely neglected even those reporting obligations. In practice, member governments’ incentives to protect national reputation and economic stability often outweighed incentives to join in international efforts to report disease outbreaks early. At the same time, vaccines and antibiotics minimized some common infectious diseases in the United States and Europe, easing political pressure for effective surveillance. But in the 1980s, the AIDS epidemic as well as the spread of other infectious diseases highlighted the failure of existing international regulations and reawakened international interest in more effective surveillance. In 1992, the US-based Institute of Medicine identified 54 infectious diseases that were on the rise owing to a combination of increased travel and trade, germs’ adaptability, and a lack of public health measures.

In 1995, the World Health Assembly directed the WHO to revise the failed government-centered surveillance rules. But reaching agreement on new surveillance rules proved to be a slow process. Meanwhile, the WHO cooperated with private groups to create informal networks to share information. The Global Outbreak Alert and Response Network was designed to pool public and private information for response to international outbreaks. In 2001, the four-year-old network was officially endorsed by the World Health Assembly.

However, it was the rapid spread of SARS (Severe Acute Respiratory Syndrome) in 2002 and 2003 that sparked the revival of the international system of infectious disease reporting. The disease first appeared in China’s Guangdong Province in November 2002, spread to thirty countries in six months, and killed more than seven hundred people. Public fears fed by a paucity of reliable information contributed to large economic costs—estimated at $40 billion.

Significantly, initial information about the SARS outbreak did not come from government reports. It came from millions of cell phone and internet messages in Guangdong Province and elsewhere in early 2003, as well as from information provided by private reporting systems such as ProMED-mail. It was these on-the-ground reports from ordinary citizens and local health workers that spurred the WHO to make inquiries of the Chinese government, which, in turn, led the Chinese government to acknowledge the outbreak and led the WHO to issue a global alert on March 12 and a travel advisory on March 15.

The new capabilities of information technology not only marshaled far-flung resources to identify the source and character of the disease but also helped to combine the scientific expertise of many nations to bring the epidemic under control. Public health authorities in many countries cobbled together informal networks to respond with unprecedented speed. The WHO coordinated sixty teams of medical personnel to help control the disease in affected areas and a network of eleven infectious disease laboratories in nine countries, linked through a secure website and daily conference calls, to work on the disease’s causes and diagnosis. These networks made new scientific information available to researchers around the world and hastened collaborative progress on diagnosis and treatment. Researchers were able to identify the cause of SARS within a month. By July 2003, the five-month epidemic had ended mainly through isolation and quarantine.

In retrospect, it was clear that the SARS epidemic coupled with advances in communication technology signaled the end of government control of the flow of information about disease outbreaks. Even in the absence of an international legal obligation, China was pressured into reporting the spread of SARS by masses of local data provided by villagers and aggregated by private electronic surveillance systems. In May 2003 the World Health Assembly acknowledged the legitimacy of the crisis-driven changes in the international reporting system. In an important change, the assembly asked the WHO to continue using nongovernmental sources of information for surveillance. The WHO concluded that the SARS crisis demonstrated that government attempts to hide information carried a very high price. A 2004 Institute of Medicine report titled Learning from SARS suggested that the epidemic resulted in “loss of credibility in the eyes of the international community, escalating negative domestic economic impact, damage to health and economics of neighboring countries, and a very real risk that outbreaks within the country’s own territory can spiral out of control.”

The SARS crisis highlighted the inadequacy of the global response system and prompted the revision of the International Health Regulations, which dated back to 1969 and suffered from a narrow scope and reliance on official country notification. New IHR were adopted in 2005 and became effective in 2007. The new rules expanded the scope of notification to any illness or medical condition that could present significant harm to humans and strengthened international surveillance and reporting to include information from non-governmental sources. They focused on the availability of assistance to member states and called for states to strengthen their domestic surveillance capacities. To improve reporting, the new IHR established disease communication through 193 national IHR Focal Points which feed information to six regional IHR contact points. The IHR also called for external experts to advise the WHO director general on whether specific events constituted global emergencies. The revised IHR remained binding for all WHO member states but still lacked enforcement mechanisms.

In February 2009, the H1N1 flu strain, also known as “swine flu,” emerging from Mexico, put the new IHR to the test. By June, a total of 73 countries had reported over 26,000 laboratory-confirmed cases and on June 11th the WHO declared H1N1 a global pandemic. The international community was alarmed by the high mortality rate of this influenza strain, especially among children, young adults and pregnant women. However, by the time the pandemic ended in August 2010 the number of deaths from this virus was similar to the yearly deaths from seasonal influenza, leading some critics to conclude that the WHO had overreacted.

An international committee was tasked with reviewing how the WHO and the 2005 IHR responded to the H1N1 crisis. The report commended the WHO for promptly identifying the virus and for tracking the development of the pandemic, but it also recognized several vulnerabilities. These included the absence of enforceable sanctions against states that did not comply with IHR and the failure of most member states to meet public health capacity requirements. The committee also pointed to member states’ power to control the decisions and budget of the Organization. Similarly, WHO regional offices were controlled by member states who selected leadership and approved programs and budgets. This was meant to adjust response to local variations, but it also created conflicts with the WHO unified mandate. The WHO was criticized for lack of transparency in its decision-making.

The 2014 Ebola crisis renewed criticism of the WHO. The WHO secretary general received warnings of Ebola cases in March, but it was not until August, when 1,000 people had died from the disease, that the WHO recognized Ebola as a global emergency. As of January 2015, nearly 8,500 people had died from the virus in Guinea, Liberia, and Sierra Leone.

The Ebola crisis highlighted the importance of social media and big data analysis for detection and response. Healthmap, a tool developed at Boston’s Children’s Hospital, had spotted the presence of hemorrhagic fever using social media and other online mentions nine days before the WHO officially declared the epidemic. Orange Telecom in Senegal gave access to anonymized data from 150,000 cell phones to Flowminder, a Stockholm based non-profit. Flowminder used the data to construct mobility patterns to support Ebola containment efforts in the region. In Liberia, U.S. Centers for Disease Control and Prevention (CDC) researchers assisted the health ministry and local phone companies in using cell phone data to track phone calls to Ebola helplines. Social media also played an important role in educating the public about Ebola. A Nigerian activist and blogger with over 100,000 followers created the popular hashtag #FactsOnEbola to share tips on ways to limit contagion and to dispel false stories about possible cures. Several health organizations, including the CDC, used Twitter to reach out to the public and answer questions. However, social media were blamed for spreading misinformation, conspiracy theories and anxiety.

The coronavirus disease 2019 (COVID) pandemic of 2020-2022 again highlighted the benefits of transformative science and communications technology to quickly gain and share information about emerging diseases. Responses to the outbreak took place more rapidly than ever before. The WHO first warned its 194 members of an emerging infectious disease on January 4, 2020. China officially posted the virus’s genetic sequence online on January 12. In an astonishing feat built on earlier research, U.S. scientists were ready to make a vaccine three days later. By the end of January, human transmission was confirmed, the WHO had issued a global emergency warning, and China had locked down the city of Wuhan. In the U.S., the first cases had been identified, the CDC had a diagnostic test (though it botched manufacture and distribution), Congress was briefed, a federal taskforce had been formed, and the government had issued initial travel restrictions. As with the SARS pandemic, social media, email accounts, and other informal networks spread early information that created incentives for governments to act.

However, the outbreak also revealed enduring political limitations on information sharing. The Chinese government failed to act on early signs of the emerging disease in 2019 and denied U.S. scientists permission to visit in January 2020. In a startling move, the American president, Donald Trump, took steps to stop funding the WHO and cancel U.S. membership in 2020, at a time when the organization most needed funding and leadership. (The U.S. generally provided $200-$600 million a year and was usually the largest contributor to the WHO’s budget.) He falsely suggested a malaria drug, hydroxychloroquine, as a treatment. He continued to discourage mask-wearing and did not wear one himself. Falsehoods also spread on social media. It was difficult for the American public to know what to do when advice about mask-wearing and social contact was inconsistent and changeable.

As the outbreak continued, scores of technology-enabled networks combined information from many sources into comprehensible charts, dashboards, and narratives of deaths, illnesses, hospitalizations, disease spread, and vaccination. Entrepreneurial efforts included universities, media organizations, foundations, federal, state, and local governments, and digital pioneers. By 2021, all 50 state governments had created COVID dashboards, according to the National Governors Association. In another innovation, the CDC created a wastewater surveillance system that could monitor levels of the virus in communities by gathering information from water authorities. (Such surveillance also revealed the unexpected presence of the polio virus in New York State in 2022.)

But creative networks remained only as good as available data. The crisis revealed the persistent inadequacy of essential data collection and data sharing among federal, state, and local governments, as well as between government agencies and the private sector. State and local health departments had largely been left out of a decade of federal grants to modernize private sector health data systems and institute electronic health records. Spending for state and local public health departments declined 16 percent or more per capita from 2010 to 2020, according to a report by the Associated Press and Kaiser Health News. And their disease-reporting to federal officials generally remained inconsistent and voluntary. The resulting lack of information left questions about disease spread, vaccination plans, equipment needs, and isolation policies without clear answers based on science.

By 2022, the CDC estimated COVID had caused more than 600 million illnesses and six million deaths worldwide. In the U.S., it had caused 98 million illnesses and more than one million deaths. These tragic outcomes produced scores of proposals for improving national and international responses to future pandemics. In January 2022, the Biden administration proposed amendments to the International Health Regulations that would strengthen early warning and expert access to locations of emerging diseases and broaden the WHO’s authority to declare public health emergencies. In May 2022 the World Health Assembly set up a process to evaluate the WHO response to the pandemic and consider amendments to the regulations. Studies conducted for the WHO also suggested creating an international pandemic treaty.

In the U.S., bills in Congress proposed making state and local disease reporting mandatory rather than voluntary and creating a commission to plan pandemic preparedness. The Biden administration proposed a national biodefense strategy to improve public health infrastructure and created an Advanced Research Projects Agency for Health (ARPA-H), a new entity within the National Institutes of Health to speed development of advances. It remained to be seen whether these national and international proposals would lead to substantial improvements in pandemic preparedness or would fall victim to past patterns of de-funding and political amnesia once the crisis receded.

Updated November 2022