Reporting Disease Outbreaks in a World with No Digital Borders
Abstract and Keywords
In a world of fast-paced, globalised travel and trade, early detection of communicable disease outbreaks has become ever more important to prevent the rapid spread of disease. To facilitate surveillance and reporting, detection and communication must be as fast paced as the movement of the outbreak. This sense of urgency has prompted a pivot to technology as the best solution to keep up with the spread of disease. Reliance on a variety of state and nonstate informants with access to surveillance platforms to report potential disease outbreak events to the World Health Organization (WHO) has led to its formal recognition in the revised International Health Regulations (IHRs). However, as this chapter discusses, the inclusion of nonstate reports in disease surveillance and reporting remains a practical and political challenge.
Since they were signed in 2005, the revised International Health Regulations (IHRs) have guided states on their disease outbreak response, verification, containment, and alert procedures. The revised IHRs reflect the fact that in a world of fast-paced, globalised travel and trade, early detection of communicable disease has become ever more important to prevent the rapid spread of disease. However, the tools to facilitate surveillance and reporting, detection, and communication must be as fast paced as the movement of the outbreak. This sense of urgency has prompted a pivot to technology as the best solution to facilitate disease alerts without compromising continued travel and trade. A new requirement of the revised IHRs, therefore, was that states should promptly communicate with the World Health Organization (WHO), and amongst each other, about outbreak events that might meet the criteria of a public health emergency of international concern (PHEIC). This requirement also addressed the reluctance states might have about reporting outbreaks, for fear of the potential economic impact from reduced travel and trade, as well as the potential for reputational risk. To ensure improved communication of outbreak events, the revised IHRs introduced timelines for communicating disease outbreak reports (24/7 hour notice to WHO of suspected outbreaks through appointment of an IHR focal point within government; 48 hours to verify a suspected outbreak).
In an apparent break with the state’s monopoly on reporting outbreaks, the revised IHRs stipulated that nonstate actors (broadly defined) could also directly communicate suspected outbreak events to WHO. Under article 9 (WHA 2005), WHO may take into (p. 514) account ‘sources other than [the state] for notifications or consultations’ and ‘assess these reports according to established epidemiological principles and then communicate information on the event to the State Party in whose territory the event is allegedly occurring’ (article 9.1). In 2016 more than 60 percent of WHO’s first news of outbreak reports came from ‘unofficial sources’ (sources other than the state), which include electronic media, discussion sites, social media, and Internet surveillance response programmes (ISRPs) (WHO 2016). Referred to as ‘digital disease detection’ (DDD), ISRPs trace ‘big data’ patterns in cyberspace to detect risk, as well as scan news and media websites for higher than usual reports of disease outbreaks (Lazer et al. 2014; Vayena et al. 2015). Big data algorithms are constantly finessed to predict the next outbreak. This includes text mining of social media pages; doing Google searches on terms such as ‘flu’ or ‘outbreak’; and tracking human behaviours such as purchasing patterns from pharmaceutical sites, the monitoring of local news reports, and filtering social media discussions on platforms such as Twitter, Facebook, and Weibo. These methods supply ISRPs—and potentially WHO—with early reports or rumours of novel disease outbreaks (Roberts and Elbe 2016). A recent example of how this method works is the tweeting activity surrounding the first case of Ebola haemorrhagic fever in Nigeria in July 2014, which occurred days before official confirmation by the Nigerian government. In this case, rather than seeing social media as a site of unverified rumours, the Nigerian government harnessed social media to good effect to communicate the spread of the outbreak (Odlum and Yoon 2015).
However, the ISRPs conducting DDD continue to attract controversy and face challenges, largely centred on the presumed benefits of digital detection relative to more traditional public health surveillance and response and questions of whether the former undermine the latter. The advantage of digital detection is that it has the potential to prepare communities and governments to contain a deadly outbreak (Brownstein, Freifeld, and Madoff 2009). However, ISRPs cannot mount investigations into outbreak rumours, nor can they erect containment responses; the WHO director-general (DG) and the government of the affected state are the only actors with the authority to act on rumours supplied by an ISRP. Acting on informal rumours carries great political risk, especially for WHO. As the Ebola outbreak in West Africa in 2014 tragically demonstrated, ISRPs do not exist primarily because WHO is often uninformed about an outbreak. Rather, ISRPs exist because nonstate actors have and will report against the wishes of governments that seek to deny the existence or extent of an outbreak (Ebola Interim Assessment Panel 2015, 10). This has the potential to put WHO on a collision course with some of its member states.
Other questions pertain to the ethics of data collection and usage and the lengths ISRPs may go to in conducting individual-level surveillance required for digital detection in the name of health security. Critics of big data contend that public health surveillance that relies on digital methods facilitates the growth of the surveillance state. The danger here is that excessive surveillance could be legitimised in the name of health security, raising difficult questions about how to balance the demands of public health and the individual’s right to privacy (Calain and Abu Sa’Da 2015; Vayena et al. 2015). This is a (p. 515) particularly pressing question in politically suppressive states, where the information gathered could be used to limit individual freedoms (Fung, Russon Gilman, and Shkabatur 2013).
This chapter explores the contemporary topography of ISRPs and examines the challenges and controversy their work elicits when they provide information on suspect outbreak reports to WHO and on their servers. The first section of the chapter provides a brief history of ISRPs up to their contemporary inclusion in the revised IHRs. The second part of the chapter explores the practical challenge of acknowledging ISRPs’ right to report under the IHRs. The case of the Middle East respiratory syndrome (MERS) outbreak in Saudi Arabia in 2012 is then examined to illustrate the particular tensions that arise in permitting nonstates to report on disease outbreak events within states with tightly regulated social media spaces. The MERS case illustrates the critical challenge WHO faces in managing its need for ISRPs whilst also seeking to avoid political blowback from states that do not want outbreak events to be reported on these sites. The chapter argues in the conclusion that to perform this delicate balancing act, WHO is best placed to develop standard operating guidelines on the growing ISRP sector and its role in reporting under the revised IHRs.
The Challenge: ISRPs’ Right to Report (and to Be Heard)
The surveillance and reporting chain in local systems begins with detection—usually through a health clinic—which relays news of the suspected outbreak to a central health ministry. National health ministries have the option to verify before reporting the incident (on a website, in a press release, or to WHO). If the disease falls under Annex 2 of the revised IHRs (2005), a government is expected to immediately report an outbreak to WHO. Annex 2 is a matrix that states and WHO uses to determine whether the outbreak must be reported to WHO. It lays out when the outbreak should be reported if suspected (particularly that a state should not wait for laboratory verification); it provides a list of suspected disease outbreaks that must be reported to WHO; and it provides a list of outbreak events where, if the outbreak is unknown, at what point the IHR focal point must notify WHO. The national IHR focal point can relay the report to WHO headquarters in Geneva or to one of the six WHO regional offices, as occurred in March 2014 when an outbreak of Ebola in Guinea was reported to the African regional office. In the past when this has not happened—due to a government concealing the extent of an outbreak (e.g., the 2003 outbreak of severe acute respiratory syndrome [SARS] in the People’s Republic of China) or a poorly functioning surveillance system (the 2009 H1N1 influenza outbreak in Mexico)—alternative reporting sources were essential in relaying to WHO and to neighbouring states disease surveillance information that a state was reluctant to provide or did not have.
(p. 516) This raises the question of under what authority WHO—a body whose membership consists solely of states—can receive reports from nonstate actors about a disease outbreak located in a member state. When states adopted the revised IHRs in May 2005, they agreed to openly and promptly report outbreaks with the potential for ‘international spread’. What was significant about the IHRs’ revision was a shift from a model focused exclusively on alerting the international community about an outbreak (and taking relevant quarantine measures) to the adoption of a ‘legal instrument [that sought] to ensure global health security through a collective approach’ (Li and Kasai 2011, 7). Pre-emption was the goal attached to the revised IHRs, and this marked out the importance of reporting: states have to know in order to contain. Baker and Fidler (2006, 1062) argue that one particular strength of the revised IHRs was the inclusion of a provision in article 9 that permitted WHO to receive reports of disease outbreak events from sources other than the affected state.1 They argue that article 9’s significance lies in the potential for WHO to ‘cast its surveillance network beyond information it receives from governments…. [This would] avoid being blocked by governmental failure to comply with reporting requirements’.
The significance of article 9 lies in the expectation that to facilitate a transparent surveillance and reporting system, WHO must be permitted to receive reports of disease outbreaks from sources other than the state. Despite World Health Assembly (WHA) approval of this practise in the 2001 resolution ‘Global Health Security’ (WHA 2001), it was a contentious practise during the SARS outbreak in 2003 (Cortell and Peterson 2006; Kamradt-Scott 2015). In addition to reports from health ministries, the WHO Secretariat relied upon reports from media, scientists, and individuals about suspected SARS outbreaks (Heymann and Rodier 2004; Heymann, Mackenzie, and Peiris 2013). In the case of China, the state reported to WHO headquarters (for some months) a very small SARS caseload, whilst WHO was simultaneously being informed by nonstate sources within and outside China that the extent of the infection was much greater (Fidler 2004). Controversially, WHO used these reports to request the Chinese government check its cases, issued travel advisories against the country, and publicly rebuked the government for not revealing the full extent of the SARS virus, particularly in Beijing. The fact that WHO’s use of nonstate reports was formally adopted under article 9 in the revised IHRs, agreed to in the aftermath of SARS, was regarded as a vindication of the WHO DG’s efforts to demand more reporting transparency from states and to attach consequences to lack of transparency (Mack 2007). The revised IHRs were considered a ‘new dawn’ for global health, whereby WHO may receive reports from nonstate sources and act upon them to elicit further information from a recalcitrant state (Rodier 2007).
Since the euphoria over article 9, little discussion has followed addressing the challenge of realising its promise. In particular, how does WHO persuade affected states of the need to investigate outbreak reports issued by nonstate actors? And how does WHO respond to outbreak reports from nonstate actors that appear credible but are denied by the host state? The advantage of article 9 is that it permits WHO to listen to other sources and not solely rely on a government, particularly if that government is suspected of (p. 517) covering up the true extent of a health crisis. However, at the same time, WHO is obliged under the same instrument to assist governments with the creation of effective risk communication strategies to control and direct the flow of information through one source, the health ministry or the executive level of the government (Ijaz et al. 2012).
Contrary to the view that surveillance is an unwelcome intrusion on the state’s authority and capacity to detect, the use of big data for digital disease detection has actually proven useful for states. Examples include claims that the Nigerian government used social media analytics and open data sharing to successfully respond to the Ebola outbreak in Lagos in 2014, as well as improving timely responses to tuberculosis and polio outbreaks (Pisani et al. 2016). The benefit of ISRPs for their users—whether states or WHO—is their analytical capability to distinguish the ‘signal from the noise’ (Brownstein et al. 2008, 1019). It is important at this point to clarify between ISRPs—which may use, amongst other tools, social media to detect outbreak events—from DDD, which seeks to predict disease outbreak events from social media usage. Some DDD, such as the GoogleFluTrend prediction of double the number of flu cases in the United States in the 2014 flu season, has caused much embarrassment and misappropriation of health resources (Lazer et al. 2014). In addition, there is evidence that on the (rare) occasions a government tweets outbreak events, social media users do not engage at any level that would suggest a transformative potential of DDD from traditional public health messaging (Hornmoen and McInnes, 2016). In the case of ISRPs, there have also been situations in which their reports could not be verified, posed a resourcing burden, or were politically unwelcome. Medicins Sans Frontiers (MSF) argued that its focus on developing a disease surveillance network in Haiti after the 2010 earthquake provided great aggregated data reports—but could not detect the cholera outbreak (Polonsky et al. 2013). There have also been situations in which the ISRPs were ignored; in the recent case of Ebola viral disease in West Africa in 2014, ISRPs were receiving reports from nonstate actors that contradicted the official reports in Guinea, Liberia, and Sierra Leone, and WHO headquarters chose to listen to the states (Gostin, DeBartlo, and Friedman 2015).
Since the adoption of the revised IHRs, much attention amongst ISRPs has been devoted to improving their efficiency in detecting outbreaks (Hitchcock et al. 2007; Castillo-Salgado 2010; Collier 2010). There has also been increased focus on ISRP interoperability with the Global Health Security Initiative (GHSI) (launched by the G72 countries in 2001), including the creation of a GHSI Strategic Framework, which seeks to promote a common platform for detection, reporting, and response amongst ISRPs (Hartley et al. 2010; GHSI 2014; Dion, AbdelMalik, and Mawudeku 2015). Long established ISRPs such as Global Public Health Information Network (GPHIN, located in the Public Health Agency of Canada) and ProMED (in partnership with Google’s HealthMap since 2014) rely on two information streams: big data algorithms to detect and report disease outbreaks and human analysts who sift through the reports to detect the ‘signal’ in the noise. GPHIN and ProMED have been referred to as ‘platinum’ sites for their reliability (Collier 2012), which comes from their use of human analysts—epidemiologists and language specialists—whose roles are to interpret the data collected. Under GPHIN, (p. 518) analysts with language proficiency in Arabic, Farsi, English, Spanish, Russian, Chinese, Portuguese, and French can sift through thousands of reports daily to determine which ones should be placed on the subscriber-only alert page (which can also be emailed to subscribers). GPHIN was developed in a partnership between WHO headquarters and the Public Health Agency of Canada in 1996. It was one of the first ‘real-time’ surveillance networks, and originally reports were only issued to fee-paying subscribers. GPHIN, whose staff are all Public Health Agency of Canada employees, has gone through various iterations and is currently a 24/7 early warning system for infectious disease outbreaks that is open source to any subscriber. ProMED has been providing infectious disease alerts to its subscribers since 1994, using volunteer moderators and analysts. It has been aligned with the International Society for Infectious Diseases since 1999 and relies on donations for support. ProMED reports are published on the HealthMap site (http://www.healthmap.org/en/), and they now share a visual world map of disease outbreaks that is updated 24/7. ProMED describes itself as ‘open to all sources and free of political constraints. Sources of information include media reports, official reports, online summaries, local observers, and others’ (ProMED 2016). There are seventy thousand subscribers to ProMED across 185 countries.
Contemporary Internet-based health surveillance tools use various techniques to report (mostly) infectious disease outbreaks. Some primarily use text mining of media reports for disease outbreak events (e.g., MedISys);3 others incorporate algorithms, media reports, and correspondence from users, which are distributed to subscribers (e.g., ProMED, GPHIN). Still others attempt to refine ontology software so that it may conduct both text mining and language translation for reports (e.g., PULS Project: Surveillance of Global News Media).4 To date, GPHIN and ProMED are the longest serving infectious disease surveillance networks and the only two to rely on human analysts prior to online publication of reports. When GPHIN or ProMED reports a disease outbreak that has not been confirmed by a state, tensions have and can immediately escalate if that state did not want the outbreak reported (Madoff and Woodall 2005). In previous situations, including the Nipah virus outbreak in Malaysia (1997), SARS in China (late 2002), and MERS in Saudi Arabia (2012), direct notification of these outbreaks from ‘informal’ channels (healthcare workers, laboratories, and ‘laypersons’) has been made at great personal risk (Madoff and Woodall 2005; Branswell 2013b; Dion, AbdelMalik, and Mawudeku 2015).
The capabilities of ISRPs vary widely in both type and performance (Castillo-Salgado 2010, 98–100; Hartley et al. 2010, 3). The type of intelligence generated depends on each ISRP’s functionality, accuracy, and coverage. However, the right to act on these reports rests with WHO, specifically the WHO DG, and the political consequences of using such reports explain the variation in their use by successive DGs. Gro Harlem Brundtland, for example, proactively sought to forge relationships with ISRPs, and WHO epidemiologists within the infectious disease section often formed partnerships to investigate reports (Grein et al. 2000). Her successor, Lee Jong-wook, also promoted a series of global surveillance systems—global tuberculosis, global vaccine immunisation, and global polio surveillance—that have retained nonstate- and state-informed surveillance (p. 519) to this day. Margaret Chan’s record of acting on article 9, however, was varied and was tested more than the two previous DGs. During her tenure (2007–2017) there were serious cross-border and cross-regional outbreaks of H1N1, MERS, poliovirus, Ebola, Zika, and yellow fever, leading to the creation of six IHR Emergency Committees.
At this stage there is little evidence to support shifting the entire surveillance and response model to social media tools to both predict outbreaks and manage risk communication during outbreak emergencies. However, the ISRPs to date—particularly GPHIN and ProMED—have had varied experiences. Their success was significant enough to lead to WHO obtaining the right to use the information provided by these information providers (and other nonstate entities) in the revised IHRs. However, the influence that ISRPs have on WHO behaviour in compelling states to report outbreaks has tended to depend on the commitment of the WHO DG. The next section explores a contemporary case of nonstate reporting concerning MERS and the impact when such a report has been made against the wishes of the affected state. The first MERS report in Saudi Arabia and the WHO DG’s reaction to this report exemplify the complex and political nature of ISRPs as well as the less acknowledged—but crucial—relationships amongst political openness, access, coverage, and freedom to report.
The Controversy from Nonstate Reports
What is the perceived benefit from a global disease surveillance system? First, some contend that there is little added benefit and that the focus is misplaced. The original attraction of global disease surveillance is to warn developed nations of the ‘North’ about diseases coming from the developing ‘South’. The perception that states ‘hide’ outbreaks is rarely accurate; most often states just don’t know (Kamradt-Scott and Rushton 2012). Therefore the real solution to protecting the ‘North’ and the ‘South’ is a strong local (nationally run) health surveillance system. Others contend that no surveillance system can address inequity: its capacity and purpose is to provide greater health security. Global disease surveillance therefore provides an additional surveillance service to alert and prepare multiple states for a potential outbreak; a global system has the technological capacity to detect behaviours that could provide early waning to the state affected, and they are able to communicate a coordinated message to multiple users (Grein et al. 2000; Collier 2012). A third argument is that global disease surveillance is an insurance policy—it assists in those situations when a state cannot accurately report an outbreak situation and is the backup for regions and the international community in situations when a state chooses not to report an outbreak situation (Fidler 2004).
The WHO-appointed Review Committee on the Functioning of the International Health Regulations on Pandemic Influenza (H1N1) 2009 noted in 2011 that there were unresolved tensions in how to manage (a) WHO’s need for information (which may not (p. 520) reliably come from affected states), (b) its right to acquire information from nonstate sources, and (c) the need for state verification to proceed with outbreak response recommendations:
Although WHO has a broad mandate to share urgent information on public-health events, WHO usually obtains agreement first from the affected State Party. The process of consulting with States Parties may delay posting on the EIS [Event Information System]. There is an inherent tension between WHO’s obligation to inform other States Parties and the affected State Party’s interest in avoiding potential social and economic consequences. WHO tries to balance these priorities and sensitivities through dialogue, respecting the requirements in Article 11. For the EIS to become an even more valuable tool, States Parties should be more willing to let WHO share information. The WHO EMS was developed to track information on public-health events.
(IHR Review Committee 2011, 54)
In 2015 the Ebola Interim Assessment Panel, appointed by the WHO DG to examine the organisation’s performance during the 2014 outbreak in West Africa, reinforced this view. It noted that member states have ‘largely failed’ to implement the IHRs’ core capacities, since no functional in-country surveillance was available to detect the extent of an infectious disease outbreak (Ebola Interim Assessment Panel 2015, 11). In addition, the panel noted a deliberate intention by the states most affected by the outbreak (Guinea, Sierra Leone, and Liberia) to delay their own government-issued reports whilst denying outbreak reports from nonstate sources. Despite the authority of WHO to investigate these nonstate reports, and despite repeated warnings from nonstate actors that the situation was grave, WHO senior management did not challenge the actions or denials of these states (Ebola Interim Assessment Panel 2015, 12). How can we explain such confusion if article 9 is as clear-cut as others have argued? To help answer this question, we now examine an earlier case, the first outbreak of MERS in Saudi Arabia in 2012.
In June 2012, a patient with a severe respiratory disease was admitted at the Dr Soliman Fakeeh Hospital in Jeddah, Saudi Arabia. When the patient did not improve, Dr Ali Mohamed Zaki, an Egyptian national and professor of microbiology at the hospital, took a sample of sputum to identify the cause of the sickness. When he could not detect a positive for any of the suspected diseases, he contacted Dr Ron Fouchier at Erasmus Medical College in Rotterdam, Netherlands. Suspecting a novel virus, Dr Zaki sent a sample to be tested in Dr Fouchier’s lab. Dr Zaki argues that he ‘complied with procedures by submitting a virus sample and associated clinical data to the Saudi Ministry of Health on 18 June’ (Butler 2013). There was no follow-up from the health ministry, so he continued to cooperate with Dr Fouchier’s lab. The Saudi Ministry of Health has since said that it does not deny regular procedures were followed, but that Dr Zaki did not inform them that the sample was suspected to be a novel virus (Butler 2013). In September, Dr Fouchier reported to Dr Zaki that the Erasmus lab had detected a novel coronavirus (Zaki 2012).
Two events then had an immediate impact on Dr Zaki. On the same day that he notified the Saudi government of the coronavirus finding by the Erasmus lab, he notified the (p. 521) international community via an ISRP, ProMED (Barboza et al. 2013). The email from Dr Zaki—after verification by the ProMED team—was distributed to thousands of subscribers (government, laboratory, non-government, civil society, media, universities, individuals) around the world. Dr Zaki later explained that he decided to notify via ProMED for two reasons. First, he believed that the potential risk to the upcoming Hajj pilgrimage necessitated immediate notification to travellers and to hospitals internationally, who might see individuals with coronavirus symptoms on the pilgrims’ return from Mecca. A related second reason he went to ProMED was that he lacked confidence in the Saudi government’s sharing this diagnosis to ensure that countries could detect MERS infections (Sample 2013).5
At the same time, the Erasmus lab named the virus human betacoronavirus 2c EMC (hCoV-EMC) and set up a material-transfer agreement (MTA) for virus samples. An MTA, argues David Fidler (2013), was not unusual in this area, where there are usually agreements concerning the safe transfer of biological samples. This MTA preserved ‘Erasmus’ ownership of the virus samples it had received, protected its ability to obtain intellectual property rights on research outcomes from that sample, and required labs that requested the virus to demonstrate necessary biosafety level status to handle the virus’ (Fidler 2013). However, the MTA meant that to test the Erasmus sample, the Saudi government would need to sign an MTA with Erasmus. The government responded by immediately dismissing Dr Zaki, revoking his working visa, which forced him to return immediately to Egypt.
By May 2013 there were thirty-four laboratory-confirmed cases of the new MERS coronavirus (De Groot et al. 2013). It was revealed during this time that possibly the first case was an outbreak of suspected pneumonia amongst healthcare workers in a Jordanian hospital in April 2012. During 2013, reports started to appear questioning the degree to which the Kingdom of Saudi Arabia, in particular, was being forthcoming about the volume of MERS cases treated there (Branswell 2013a; European Centre for Disease Prevention and Control 2013). For most of 2013, only laboratory-confirmed cases were reported to WHO, despite the MERS IHR Emergency Committee recommending that all states report suspected as well as confirmed cases (Ministry of Health Saudi Arabia 2013; WHO 2013). In early 2014 there was a proliferation of social media activity—on Twitter and Facebook—amongst, apparently, healthcare workers within the kingdom, who alleged that the extent of the outbreak was being concealed (Levy and Binshtok 2014).6 Ten laboratory-confirmed cases of MERS were reported from Abu Dhabi in April 2014 (WHO 2014a), the same time that social media reports concerning MERS in Saudi Arabia reached their height. On May 1, WHO issued the following statement: ‘Saudi Arabia has provided information on 138 cases identified between 11 to 26 April 2014 in the country, including preliminary details of cases and deaths associated with the outbreak in Jeddah. WHO will update the global total of laboratory-confirmed cases of infections with MERS-CoV, including deaths, based on official information provided by Saudi Arabia as quickly as possible’ (WHO 2014b).
WHO was permitted to enter Saudi Arabia to assess the government’s handling of MERS, whilst at the same time a cabinet order directed all Saudi news media to quote (p. 522) only official sources on the disease. The Ministry of Health allegedly advised healthcare workers that they could be imprisoned for disclosing any information issued by the ministry, which included information on infectious disease outbreaks (Al Omran et al. 2014). The same month, the health minister and deputy health minister were fired for allegedly failing to disclose full reports (Branswell 2015). After the WHO visit, the Saudi government released a statement claiming that it would review procedures for reporting cases (Ministry of Health Saudi Arabia 2014), but some governments (United Kingdom) and regional organisations (i.e. European Centre for Disease Prevention and Control) continued to express concern about the limited amount of information coming out of the region about the virus, fuelling ongoing queries about the timeliness of and full details being provided in outbreak reports (European Centre for Disease Prevention and Control 2014; Branswell 2015).7
Very little was said about the Saudi government’s transparency regarding MERS by WHO, which is what made comments at the 2013 WHA from its DG (Dr Chan) all the more curious. In May 2013, Saudi Arabia deputy health minister Zaid Memish had presented to the WHA the MTA placed by the Erasmus lab on its sample of MERS (which had been sent by Dr Zaki). Dr Memish argued that this MTA had prevented the Saudi government from studying the virus to improve its own diagnostics. Dr Chan not only sided with Dr Memish, but also argued in her subsequent speech at the WHA that delegates must ‘share your specimens with WHO collaborating centers, not in a bilateral manner. Please, I’m very strong on this point, and I want you to excuse me. Tell your scientists in your country, because you’re the boss. You’re the national authority. Why would your scientists send specimens out to other laboratories on a bilateral manner and allow other people to take intellectual property rights on a new disease?’ (Fidler 2013).
David Fidler and others have argued that this statement, which was supported by WHO assistant general for health security and environment Keiji Fukuda, was not only incorrect but carries serious implications for future Dr Zakis and ISRPs (Butler 2013; Fidler 2013). Chan’s comments—insisting on national authority over specimen control—gave no consideration to Dr Zaki’s claim that he had approval to send the virus, nor did it acknowledge the importance of his alert to ProMED, which spurred international action to detect the virus. The ProMED report directly led to a patient in London being tested for the virus in the same month, and in effect alerted the international community to the new disease (Zaki et al. 2012). Dr Chan’s exhortation to ‘[t]ell your scientists in your country, because you’re the boss’ has implications beyond situations in which scientists need international assistance to diagnose an outbreak. This statement does not acknowledge the right of the nonstate actor to report despite its inclusion under article 9 of the IHRs.
In this case, there was an obvious tension between supporting a national government, virus sample sharing, and rapid diagnosis, especially in a situation where the state was unable to diagnose the pathogen but wanted to maintain control over the reporting of the outbreak and the use of sample(s). There was a further tension here because WHO wanted to be part of the diagnostic process and resented others such as Erasmus and ProMED (p. 523) adopting roles that WHO believed were its responsibility. This position is challenged by Dr Chan’s own recent observation that ‘any delay’ in diagnostics compromises WHO’s response to assess whether the situation constitutes an outbreak of international concern (Chan 2015). Such delays cost lives and make it more difficult to contain a virus. However, it appears from her MERS statement that Dr Chan’s principal consideration was the need to include WHO collaborating centres in all shared diagnostic processes. Failure to include WHO in the diagnostics process will lead to delays in global alerts and notices concerning an outbreak, but Chan’s statement implied that unless WHO was itself involved, the organisation would not accept reports from unofficial sources, view them as legitimate sources, or protect the right of such reporting platforms to exist. However, this denies the political and reporting culture of countries that may lead individuals to approach ISRPs (UNGA 2013, 10–11). Saudi Arabia is widely viewed as a repressive environment for media and social media users (Callanan and Dries-Ziekenheiner 2012; Freedom House 2015; Reporters Without Borders 2015). It has low levels of transparency, rule of law, and judicial independence. Access to the Internet and use of social media platforms are rapidly growing, with 63.7 percent of the population of twenty-nine million having access to the Internet (Freedom House 2015). The Saudi government retains tight controls on its usage and routinely blocks posts, even imprisoning individuals if there is ‘sensitive political content’ (Reporters Without Borders 2015). In such an environment, it is arguably difficult to trust unreservedly the public communication of the government about emergencies, and it is also difficult to challenge the government’s version of events, particularly when it is coupled with the introduction of harsh penalties for those who provide information directly to international bodies without first filtering it through the government.
This case reveals three tensions in the operationalisation of article 9 under the IHRs (2005) and the contribution of ISRPs to outbreak detection. First, the individual right to report potentially challenges the state’s monopoly on information. Reporting under Article 9 presents significant risks for the individual or non-government organisation (Wirtz 2008; Shkabatur 2011). Open source reporting depends on political environments that permit (if not condone) full disclosure and facilitate open communication (Rød and Weidmann 2015). Related to this is the second point: the type of global reporting system articulated in article 9 relies on individuals knowing about an outbreak situation and being able to communicate such information. Under article 9, states are expected to respond to WHO communications based on nonstate reports within twenty-four hours, and the source of the report is permitted to remain confidential. This may not be of paramount importance for an international ISRP such as GPHIN or international non-governmental organisations (NGOs) such as MSF, but for individuals from local NGOs who may wish to inform these sites or WHO itself about outbreak events, confidentiality may be vital. In the tightly controlled information technology and journalistic space of Saudi Arabia, health workers who reported on MERS cases lost their jobs and were threatened with imprisonment (Knickmeyer and McKay 2013). Given the risk of reporting, there is also the (even) less acknowledged problem of the (p. 524) false positive: What if the report is wrong and WHO’s action risks the lives of those who reported? The third tension within article 9 stems from multiple source reporting (O’Malley, Rainford, and Thompson 2009). Whilst the MERS outbreak in Saudi Arabia revealed how attempts to manage crises through secrecy fuel suspicion and panic (Roberts 2007; Cyranoski 2013), the goal should be for states to improve their own capacity to detect and verify disease outbreak events. Article 9 was originally promoted as an opportunity for states to improve their own surveillance and reporting practises to ‘beat’ those who report under article 9 (Rodier 2007). Of course, an alternative view is that article 9 drives states to be more secretive and exercise control over freedom of information exchange amongst those in the health sector (Heymann and Rodier 2004; Castillo-Salgado 2010). This is no doubt controversial, but any measurement of a state’s adherence to the revised IHRs requires understanding the type of transparent political institutions required to permit technical proficiency in surveillance and response (Davies 2012). There is growing evidence that in low-capacity environments where health systems are already stretched, the use of media reports to inform surveillance and response to disease outbreaks can assist with outbreak detection and containment (Ao et al. 2016). However, such a system requires local media to have freedom to report events as they occur.
The existing ISRPs face multiple hurdles, including creating uniformity in reporting to build trust in the concept of DDD, the capacity to differentiate to survive competition, and the proficiency to provide timely and accurate reports whilst complementing—not competing with—state surveillance activity. The existence of a provision to permit nonstate reports under the revised IHRs legitimises WHO’s receipt of such reports and taking action based on them. As such, the challenge and controversy that has arisen during H1N1, MERS, and Ebola outbreaks may point to WHO’s dereliction in fulfilling the promise of article 9. But WHO’s wariness to openly challenge a state’s report on the basis of information received under provisions of article 9 also points to what was forgotten when the IHRs were adopted in 2005. It is not only WHO headquarters that wants to know of an outbreak that could risk health and trade. All states want to know, and they especially want to know if it is on their borders. States agreed to article 9 in part because of the inevitability of information leakage, and because the IHRs included the provision for states to develop their capacity to manage the detection process and communications required during an outbreak. The critical challenge that ISRPs and WHO may continue to face is political blowback from states that do not want outbreak events to be reported on these sites. To date much concern has focused on the potential unethical use of surveillance methods to collect big data. This chapter has revealed that whilst those concerns remain legitimate, it is equally important to remain attentive to the existence of political situations in which excessive reporting restrictions may impede data collection during disease outbreak emergencies.
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(1.) Article 9 permits WHO to ‘take into account reports [of outbreak events] from sources other than notifications or consultations and shall assess these reports according to established epidemiological principles and then communicate information on the event to the State Party in whose territory the event is allegedly occurring’ (WHA 2005, article 9).
(2.) The G7 consists of Canada, France, Germany, Italy, Japan, the United Kingdom, and the United States.
(6.) According to Levy and Binshtok (2014), ten new cases were reported per day; WHO (2014) reported that since mid-March 2014, over one hundred people had tested positive for MERS in the Jeddah area, and thirty-one of them had died.