The pandemic: What should the public know?
More than six months into the COVID-19 pandemic, there is still a noticeable explosion in new scientific information and counter-information. Jahnavi Phalkey* says countries need a more nuanced approach to engage with publics overwhelmed with evolving knowledge.
doi:10.1038/nindia.2020.112 Published online 21 July 2020
We are in it – in the middle of a mammoth global health crisis that unfolds in the public gaze at a scale that the world was least prepared for. A novel virus with an unconfirmed origin, high virulence, and large susceptible population has mandated swift response, not always successfully, by governments around the world.
Halfway through 2020, people are still hungry for facts and advice on responding to the COVID-19 pandemic. Fast evolving scientific data and best thought out public health measures are under public scrutiny and are contested openly. Scientific publications in highly reputable journals are being retracted, social media platforms are facilitating the spread of unverified opinions and misinformation, and the news is full of stories of relentless human suffering.
Most people are not armed enough to ask the right questions, or cautiously examine the sources of such information. These factors, combined with prolonged national lockdowns, have either numbed or enraged our collective psyches.
It is hard to know what to believe — even for the discerning.
At this point, three messages need reinforcing while engaging with the public: one, there are different established ways of gaining scientific knowledge generally backed by rigorous methods of validation; two, knowledge is always in the making and uncertainty is an established aspect of science, especially medicine; and three, knowledge produced by the human and social sciences is just as valuable to better the human condition.
Ways of knowing: The lab, the field, the models
There are competing ways of understanding the science behind the pandemic — the laboratory (test results), the field (public health directives) and the model (computer simulations). They might complement or contest each other. Each might provide different measures of the normal and the pathological. They might not give the same advice or certainly not at the same time. Yet, it is equally important to understand that they should all have scientific validation and data checks.
Modelling, for instance, can map the spread of the infection by answering questions such as who, how or how many. Evidence on COVID-19 numbers is being accumulated across the globe rather quickly. Each model works with devices which have different levels of specificity, sensitivity and enumeration practice. This results in mathematical models of different scales, qualities and nature with no time given for a regular peer review process, making their predictions difficult to interpret if not trust.
Mathematical models, like epidemiological information and clinical data, make sense in context. For public trust to build, and for better diagnostics and therapeutics, each of these ways of gathering evidence within local health systems should be made transparent. Openness in the process of acquiring COVID-19 data should be non-negotiable.
Ways of dealing: Drugs and vaccines
A pandemic is a good time to make ourselves aware of the uncertainty endemic to medical sciences, and indeed to all science at the research frontier.
For example, even for someone who tests positive for the novel coronavirus, the severity of disease and symptoms is wildly variable. Patients expect certainty. That expectation is almost never discouraged. It should be.
The public must be informed that the development of cures, vaccines and drugs is usually a long-term exercise. It takes time to build, examine and validate evidence, for medicating the ill or vaccinating the healthy in a wide range of settings. The history of medicine offers solid examples – the vaccine needed to eradicate smallpox was created in 1796, but it took nearly 180 years for people to accept and scale it, as resources, political will, and public interest finally converged.
There is a global push to develop vaccines with more than 135 under development. As many drugs are being examined as prophylactics to alleviate symptoms and for cure. SARS-CoV-2 research collaborations around diagnostics, repurposing drugs, or developing therapies and potential vaccines are expanding rapidly. Yet, with insufficient testing and review, these new protocols are risky and people should know and debate that. At the same time, these are good grounds for creating public support towards investment in drug and vaccine development in anticipation of such crises.
Ways of being: Uncertainty and complexity
The COVID-19 pandemic, like other major public health crises, has also established that the human and social sciences have just as much to contribute as the natural sciences to improve our quality of life.
Given that a significant number of emerging infectious diseases are of zoonotic origin, health surveillance systems require information on changes in land-use patterns, food preferences, and habits of human-animal co-habitation to build evidence on emerging pathogens.
During public health crises, history helps us learn from past responses and abandoned research options. It also helps us systematically organize prior knowledge and add specific learnings from a novel challenge such as COVID-19 to it. Historians also remind us of the vulnerabilities of being locked into technology.
Historical sociology gives us a deep view of entrenched mentalities and socio-economic realities that have shaped epidemics responses across time and cultures. Not surprisingly, during COVID-19 this historic propensity to assign responsibility for outbreaks played out globally in episodes of anti-Asian racism.
Similarly, psychologists show us that fear and prejudice go deeper than the dread of infection. Epidemics put societies under pressure. Sociologists point out that this stress can reveal as well as exaggerate social fault lines between the privileged and the vulnerable, as borne out by the unorganised workers’ crisis in India. Even if a vaccine were to become available soon, is it likely to overcome existing social disparities of access to health care?
Psycholinguists, or psychologists of language, help us cut through the confusion over what counts as a ‘mild symptom’ or what the natural course of the disease may look like to a patient. Literary scholars show that narratives are central to how people understand, experience, and respond to illness. Given physical distancing, relative isolation and resulting mental health concerns, it is difficult to know if the patients assess symptoms in a medically appropriate way, or whether they are reporting an expected symptom not yet categorised as a ‘symptom’ (such as the loss of taste and smell, which were included as symptoms of COVID-19 at a later stage).
These are just a few examples to bring home the necessity for scholars from the human and natural sciences to work together perpetually to better understand and shape health outcomes.
Science and its publics
As the pandemic has amply demonstrated, we are all the publics of science. To assume that a faceless unknowing public wait to be educated by the knowing scientific community is an expensive mistake. The public consists of groups with different levels of knowledge, skills, and interests and many ways of overlapping with each other. Policy makers, public engagement professionals and science communicators must rethink ways of sharing knowledge laying more emphasis on reciprocity than on pedagogy.
As countries unlock restrictions, they need public engagement to guide risk perception, create trust in scientific research, and to improve compliance on public health directives. They also need to strengthen the scientific response to the crisis and, therefore, must help the public understand who generates, processes, disseminates and controls knowledge.
The public also needs to be aware of what a public emergency entails. The WHO identifies about 20 neglected tropical diseases endemic in 149 countries. These diseases kill significant number of people but rarely become pandemics, and mostly occur away from public eye. The public must know the implications of conducting research and implementing public health measures under mounting public and political scrutiny to deliver quick results. In rapidly changing circumstances, a strongly coordinated, large scale response is difficult. However, public health practitioners and rapid responders have to make quick decisions that affect a large number of people.
It is important to build the public’s critical abilities so that they can gauge the veracity of scientific claims. This entails facilitating a deep appreciation of the fact that good research often results from multiple failures and may have limitations.
We are not very good at coping with uncertainty and complexity. We do not necessarily have accurate perceptions of our susceptibility, the severity of illnesses, of barriers between us and the infection, or of benefits of following public health advice.
The COVID-19 pandemic offers a time to step back and begin the groundwork for better public engagement with science and of better health outcomes in the long run.
(*Historian of science and Founding Director, Science Gallery, Bengaluru. The author would like to thank John Krige, Revati Phalkey and Roland Wittje for their insights and inputs.)