Our research explored how communities responded to two epidemics in Sierra Leone. Here we highlight some of our findings, emphasising the importance of taking note of what communities themselves infer from their experiences of epidemic diseases.
Governments talk a good deal about pandemic preparedness. However, the thinking is highly ‘top-down’. Conversations between ministers and civil servants pose questions such as: ‘how do we get the message out?’, ‘Do we need the army to impose quarantine?’, ‘Are there enough masks, body bags and vaccines?’.
Despite being leaders in this ‘top-down’ approach, the US and UK had two of the worst experiences of Covid 19. This raises the question, is it time for pandemic preparedness from ‘below’? And, if so, what would that look like?
One thing has been made clear, this will differ from country to country and perhaps, from locality to locality. Considering access to resources, it depends on what people are willing and able to achieve. In the Pandemic Preparedness Project we addressed the question about pandemic preparedness from ‘below’ in Africa, a continent with high levels of endemic poverty. We worked in two countries – Uganda and Sierra Leone.
In Sierra Leone, our initial aim was to see what rural populations had learnt from the severe epidemic of Ebola in 2014-15. Our fieldwork began in 2019. Shortly after, our plans were redirected by Covid 19. Our team now focused on studying community reactions to a pandemic.
We worked in two rural settings, one badly affected by Ebola in 2014 and one where a community self-organised to keep the disease at bay, and we stayed long enough (two years) to see how ideas changed and responses were modified as the pandemic unfolded. We observed the arrival of Covid-19, the imposition and subsequent lifting of quarantine, and the roll-out, early rejection and later acceptance of Covid-19 vaccines. We also collected information on whether coping with Ebola had helped people respond to Covid-19.
Lessons from Ebola
Indeed, much had been learnt from Ebola and some of these lessons were applicable in the new context of the pandemic. Local experience and observation had generated new insights and inferences. This new knowledge deserves a name. Citizen science is one that might be applied.
‘Citizen science’ entered the Oxford English Dictionary in 2014. It is generally used to refer to volunteers taking on observational tasks to extend the range of a set of observations available to scientists. In some cases, it is driven by the enthusiasm and commitment of hobbyists – bird watchers and amateur astronomers, for example.
Our approach was somewhat different. The observational data gathering was dependent on our local community collaborators. The methodology prioritised knowledge informed by lived experiences, treating locals as skilled observers of what doctors and nurses might sidestep or fail to consider.
Enrolling carers as observers in an epidemic is in fact, as old as epidemiology itself. In his 1661 book, which is arguably considered the origin of scientific epidemiology, John Graunt drew on the work of female mortuary attendants, generally uneducated older women. He was looking for patterns of death that might indicate plague. He believed the reports of these women ‘might be sufficient’ because they were based on ‘sense’ (first-hand observation of corpses shortly after death).
We made the same assumption about family carers for Ebola cases. Many were older women who often knew where the patient had recently been, what they had been doing and eating. Official information for Ebola stressed avoiding bush meat, thought by scientific advisers to be a major source of infection. People knew this was unlikely. The infection spread equally among bush meat eaters and strict Muslims who avoided bush meat. From their observations they knew that cases occurred among people who had visited the sick or had taken part in preparing the body of an Ebola victim for burial. In other words, local communities did not shy away from challenging scientific orthodoxy.
When we asked a random sample of 720 residents in 26 villages what caused Ebola, most reiterated the official explanation i.e., that it was caused by eating bush meat. However, later in the same interview, when interviewees were asked what they personally believed caused Ebola, the answers changed. A sizeable majority now credited human contact. Some further specified that the risk increased with visitors and relatives from outside.
Local discoveries in disease control
Rules preventing inter-village movements were more generally promulgated and widely obeyed as people quickly saw they worked. In one of our communities even family members returning from Freetown or Bo (where Ebola raged) were turned back on roadblocks manned by community volunteers and the entire chiefdom had no cases even though two neighbouring chiefdoms had many.
A general understanding grew around these local discoveries in disease control – that health depended on following the Ebola rules of ‘no visiting’ and ‘no touching’. The same approach was followed for Covid-19, and neither community had many cases.
One difference with Covid-19 was that it represented a challenge to ‘citizen science’ based on acuity of local observation as the disease was less visible than Ebola. Pandemic infection rates were much higher than people realised because the disease was so readily confused with other viral respiratory infections.
The same observational acuity was applied to vaccination. At first many people refused the vaccination, saying that it would be sufficient to follow the Ebola regulations on social distancing instead. However, they quickly saw the lack of supposed vaccine harms and so, a large number decided to get vaccinated. Not seeing the sickness was taken as evidence to confirm that vaccine was protective.
Local observational evidence
In recent reflective interviews, our local collaborators debated what they thought had worked in terms of pandemic preparedness. There was an explicit discussion of the Ebola bushmeat theory and how this had been overturned because of local observational evidence. The need to generate and follow a clear set of local rules for management of disease was also emphasised.
Observation-based conclusions were presented as evidence of the need to take preventative actions in other cases as well. The clearest of these was the frequent observation that in one community gastrointestinal diseases peaked in March, when water availability and quality were at a low. Trusting their inferences, this community was making plans to install a borehole for clean drinking water.
What is now needed is shifting the focus on observations informed by lived experience and feeding these inferences to make them sharper and more accurate. Pandemic preparedness from ‘below’ will become a reality when communities are given access to resources such as cheap testing kits. This, for example, will allow people to monitor disease risk without reliance on laboratories. There can be no doubt that even in remote rural communities’ inferences from accurate observations – science by another name – drive perceptions of disease. Citizen science already exists in these communities. We do not need to re-invent it.
What is now needed however, are ways of making observations feeding local inferences sharper and more accurate. Pandemic preparedness from below will become a reality with access to cheap testing kits, to allow people to monitor major disease risks without the need for a laboratory.
What people in our feedback meetings emphasised was the importance of a fairer, more robust system of providing medication and treatment according to need. Here, then, are the priorities for strengthening pandemic preparedness from below.