Ash Center for Democratic Governance and Innovation The Transparency Policy Project

ISSUES/CASES

Disclosing International Infectious Disease
Outbreaks to Protect Public Health

From the mid-nineteenth century on, nations 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 preventing deaths and illnesses. After several devastating cholera epidemics in the early 1800s, many nations negotiated international sanitary conventions that 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. Every year, influenza outbreaks cause 5 million serious cases and result in 500,000 deaths globally.   

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. International Health Regulations require member governments to inform the WHO about cases of specified infectious diseases within set time periods. Traditionally, national governments have controlled the flow of information on which disease surveillance is based. Regulations also specify public health activities at ports and airports and set procedures for trade and travel restrictions, including limits on those restrictions. Their stated purpose is 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 violated 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. 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 Web site 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 also 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 (they called for notification of only three diseases) and reliance on official country notification. New IHR were adopted in 2005 and went into effect in 2007. The new rules expanded the scope of notification to reflect new and re-emerging diseases, including non-infectious disease agents, and strengthened international surveillance and reporting. 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 call for external advice, for example though an emergency committee to advise the WHO director general on whether specific events constitute global emergencies. The IHR are binding for all WHO member states but they do not have enforcement mechanisms for states that fail to comply. The WHO expected that states would be pressed to comply to preserve their international reputation. 

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 the H1N1 crises 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 over-reacted.

An international committee was tasked with reviewing how the WHO and the 2005 IHR responded to the H1N1 crisis. The report issued by the committee commended the WHO for promptly identifying the virus and for tracking the development of the pandemic, but it also recognized several vulnerabilities. These include the absence of enforceable sanctions against states that do not comply with IHR and the failure of most member states to meet the capacity requirements demanded by the WHO. Furthermore, the committee pointed to a conflict between the WHO's role as global health voice and the power of member states to control the decisions and budget of the organization. Similarly, WHO regional offices are controlled by local member states who select leadership and approve programs and budgets. This was meant to adjust response to local variations, but it also created conflicts with the WHO unified mandate. The WHO also lacked guidance on the severity of the pandemic, which created confusion in the response, and was criticized for lack of transparency in its decision-making. There were also delays in the production and distribution of vaccines, which diminished overall response effectiveness. The report's recommendations to improve vaccine sharing were incorporated into WHO protocols, but many others remained unheeded.

The 2014 Ebola crisis renewed criticism of the WHO and its ability to manage the emergency, pointing to political pressures from member states, which might have delayed the response. 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 has highlighted the importance of social media and big data analysis for detection and response. Emblematically, 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, by for example identifying possible locations to set up treatment centers. The problem with the data is that they are historic and that people's mobility patterns change in response to an outbreak. In Liberia, 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. However social media were also blamed for spreading misinformation, conspiracy theories and anxiety and several health organizations, including the CDC, used Twitter to reach out to the public and answer questions. Most pilot initiatives using social media and big data analysis appeared to originate from research circles rather than from governments and international health institutions. 

Updated May 2015

This case study is drawn from Full Disclosure, Fung, Graham and Weil, 2007.

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