Rethinking Disease Preparedness: Incertitude and the Politics of Knowledge

"Unless preparedness practices - modelling, surveillance, stockpiling, administering treatments and so on - are deployed with a deeper understanding of context, with the real lives of those who are vulnerable...at the centre, plans will fail..."

In light of the multiple failures of response, globally and in various national and local settings, to the COVID-19 pandemic, this paper argues for a rethinking of disease preparedness that puts "incertitude" at the centre, examining how preparedness is constructed and how responses play out in relation to the four conditions of risk, uncertainty, ambiguity, and ignorance. By examining the experiences of Ebola, Nipah, cholera, and COVID-19 across multiple settings, the researchers draw out implications for thinking about uncertain futures in socially and culturally grounded ways, as well as about preparedness as a dynamic social and political process linked to diverse knowledges, cultures, and practices.

As illustrated in Figure 1 of the paper, Stirling (1999) contrasts: (i) risk, where the probabilities of both outcomes and their likelihoods are known (or deemed unproblematic), with (ii) uncertainty, where likelihoods are unknown, and (iii) ignorance, where outcomes and their probabilities are totally unknown, and with (iv) ambiguity, where understandings and interpretations of potential outcomes are contested between actors. The researchers suggest that conventional approaches to preparedness assume a controllable, predictable future, which assumes risk - where future outcomes can be predicted - but fails to address uncertainty, ambiguity, and ignorance. Disease dynamics are framed by different actors in different sites and over time.

The cases include:

1. Ebola: "Despite decades of preparedness efforts, the 2013-2016 West African outbreak took the world by surprise, revealing deep uncertainties and ambiguities....Some local populations considered the disease and control efforts as a fabrication of foreign or governmental agencies, aimed at political control, genocide or land dispossession, sometimes responding with violence....Such fear and distrust reflected lived histories of inequality, conflict and intrusive foreign intervention amidst structural violence....The biomedical, disease-focused response also clashed with villagers' more socially and ecologically integrated understandings of health and approaches to care....Refreshed plans were applied in the 2018-2020 Ebola outbreaks in North Kivu, yet control proved highly challenging. In a long-standing theatre of complex conflict, the response encountered myriad social and political uncertainties not amenable to containment through 'community engagement'....Fear and mistrust undermined both contact tracing and vaccination, with high levels of refusal....Meanwhile, key areas of ignorance surround the longer-term dynamics of Ebola..."
2. Nipah: "The emergence of Nipah virus in Malaysia in 1998 could be viewed as a classic 'Disease X' event....Ambiguities on the scientific front have thus been present from the outset....The next outbreak occurred in 2001 but, surprisingly, in a geographically remote site, in Bangladesh....The efforts of scientists in uncovering the complex transmission route within an 'evidence-based' paradigm did not match with local people's understandings of fate and misfortune....By 2015, 17 further outbreaks had occurred in Bangladesh, with others in India and the Philippines, each with distinctive characteristics....Preparedness plans invoke on paper an ordered hierarchy and a standardised progression of steps, allowing a shift from uncertainty or ignorance to the domain of risk management in moments of outbreak crisis....[Yet] lurking in the wings of the 'outbreak' drama is a reality that receives far less attention. This is the story about failures in basic hygiene, inadequate numbers of ambulances, lack of medical equipment, inadequate technology to detect and diagnose febrile illness and limited resources to provide medical support in the case of overwhelming illness..."
3. Cholera: "Cholera's impacts are concentrated in places that are poor and marginalised....In many respects cholera outbreaks are predictable, and certainly preventable and treatable, but a number of uncertainties combine....Attempts to tame uncertain futures are made through risk-based models - for example, linking cholera outbreaks to El Niño climatic events....[But w]hen cholera struck Haiti in October 2010, following a major earthquake, it was a total surprise....Rumours and suspicions circulated, and disputes over the outbreak emerged....Addressing...questions of social and political marginalisation...is rarely part of preparedness plans....Starting from September 2016, Yemen has suffered the largest-ever recorded cholera outbreak, in the midst of a vicious war. The preparedness plans that did exist were implemented unevenly....The uncertainties generated by regional and global geopolitics, therefore, have a direct impact on suffering. Again, preparedness plans, focused on technical risk management, never discuss such political issues, but they cannot be ignored."
4. COVID-19 (with a focus on the United Kingdom (UK) context): "Rather than acknowledging the uncertainties emerging from dealing with a novel virus and incorporating diverse scientific explanations, the UK government has claimed to 'follow the science', yet framed 'the science' narrowly through reliance on risk-based epidemiological modelling....As in the case of Ebola, a lot of faith has been put in the production of a vaccine as a way of decreasing dependence on non-pharmaceutical interventions..., although it remains uncertain whether vaccines will award long-term protection or prevent asymptomatic transmission.....The pandemic has unfolded in unexpected ways, again challenging simple models....The UK had invested significantly in pandemic preparedness planning, instead of incorporating responses from below the UK focused on different disease scenarios, and then relied on inevitably limited risk-based models to guide responses. The outcomes to date have been both devastating and discriminatory."

Thus, across the four cases, there are multiple uncertainties, ambiguities, and sources of ignorance around the objects and goals of preparedness and how plans are enacted (or not) across different temporal, spatial, and institutional scales (see Figure 2 in the paper). As the researchers stress: "Risk-focused strategies are important but not sufficient, and their dominance - and reassuring allure - can mean other considerations are overlooked....Social-political contexts, which include war, protracted crises and longer histories of structural violence, are sources of new or ongoing uncertainties that standardised plans and protocols are ill-adapted to. The cases further emphasise the disjunctures between understandings of scientists, practitioners and policy-makers and those living in diverse local settings. Ambiguities are revealed in scientific contestation, but also centre on diverse knowledges, interpretations and values around the character and significance of a particular disease and the origins of a potential outbreak. Ambiguities also revolve around how disease response is balanced against other health and livelihood priorities, as well as how global health security is framed against local freedoms, ethics and justice."

In light of the failures of the conventional approach to preparedness, the paper argues for an alternative approach that highlights four themes:

• The politics of knowledge - This would entail, for example, paying attention to who holds knowledge about what in a particular setting in thinking about preparedness.
• The constructions of time and space - For instance, focusing on the lived-with experience of those suffering from cholera, rather than simply mobilisaing around an outbreak event, might lend insight into how people understand, cope with, and respond to a range of gastrointestinal conditions continuously.
• The requirements for institutions and administrations - For example, if the UK COVID-19 response had relied from the onset on local institutions, civil society, and local authorities rather than top-down management, it might have been able to develop more effective track-and-trace systems. The emphasis is on collaboration across actors with diverse knowledge to build trust and solidarity.
• The challenges of ethics and justice - A new ethics of preparedness would acknowledge histories, political economies, unequal relationships, and everyday injustices. It would foster open and transparent deliberation about priorities, striking difficult balances between public health notions of control, individual and collective rights, ethics, and social justice.

In conclusion: "Embracing incertitude in disease preparedness responses...means making contextual social, political and cultural dimensions central....The lessons from past experiences offer important ways forward."