Epidemics begin and end in the community

17 December 2020

Marking the launch of the latest ALNAP Lessons Paper: Responding to Ebola epidemics, our new series features humanitarian practitioners and researchers sharing how they relate the lessons in the paper to their own work on the Ebola response.

First in the series is Ella Watson-Stryker, Humanitarian Representative at Médecins Sans Frontières (MSF), who provided input into the paper itself. Ella reflects on her own experience of the Ebola response in Guinea, Sierra Leone and Liberia, and comments on the importance of evidence for supporting future responses.

 

It was never my intention to work in an Ebola outbreak. When I left for an assignment with MSF in March of 2014, I was told that ‘something was happening in Guinea’. While I was in transit, lab results were released confirming that ‘something’ was Ebola.

My role was health promotion manager, which essentially meant that my team was the bridge between the medical intervention and the communities affected by Ebola. The Guinean team I worked with were young and energetic and unfailingly compassionate. Like me, they knew nothing about Ebola but thankfully we had colleagues with a depth of experience who were generous in sharing advice.

In those early days, I read everything I could about Ebola and related viruses. There wasn’t much published – especially compared to the body of research we have now. In 2014 we had a virus that killed most of the people it infected, we had no treatment and no vaccine. Now, we have an effective treatment and vaccines that can prevent infection, yet case fatality rates have not declined in the most recent outbreaks. No matter how skilled our clinicians are or how advanced our treatments become, outbreaks are not stopped by the work happening in treatment centres. Epidemics begin and end in the community.

Ella Watson-Stryker speaks with a group of people in Sierra Leone

In early 2014, there was very little literature explaining how to build the trust of people who distrust medical response in epidemics. This gap in understanding is difficult to address through research because it requires a qualitative approach that does not easily lend itself to acute emergencies. Two MSF articles [1 & 2] on the Marburg response in Angola were enormously helpful, and I learned a great deal through trial and error, but the most valuable lessons came from my colleagues, community leaders, and patients.

Surveillance, for example, is broadly agreed to be an essential component of an effective Ebola response, yet we routinely see cases missed and consequently new chains of transmission started. Rather than a technical issue this is often a result of our failure to gain the trust of those most at risk from the virus.

No publication can adequately prepare us for how to walk into a terrified community, understand their fears, motivations and priorities, and allow them to trust us with the lives of the people they love most. Building trust requires a shift in power dynamics that remains poorly understood because we have not taken the time to understand it. As Lesson Ten in Responding to Ebola epidemics highlights, there is very little research examining how approaches can be more empathetic to culture and more responsive to social determinants of health.

We know how to safely bury the body of a person who has died from Ebola, yet although Lesson Three highlights it as a priority, we still have an imperfect understanding of how to best engage families and communities so that the burial is not only safe, but also dignified. The question remains: how do we create a process that meets infection prevention and control requirements as well as the psychological and emotional needs of the family?

The tension between building trust and the need for a rapid response is always present. In that first assignment in Guinea, I learned that the most experienced of my colleagues were also the most patient. Yet, the importance of ‘soft’ skills is not reflected in the guidance we give to humanitarian workers. Soft skills are not researched, analysed and published to the same degree as ‘hard’ science. A successful research agenda for Ebola must fill this soft skills research gap and must be directed by those communities that have already experienced an outbreak.

Lesson Seven in the paper documents the broad agreement that responses should be adapted to local realities, yet there is a geographical gap in understanding. Relatively little research focuses on how context analysis should inform response strategies or which contexts are being excluded from research (for example francophone countries tend to be overlooked in a world where English dominates publications). The lessons we should have learned from Guinea and the DRC are not the same as those of Sierra Leone and Liberia.

Lastly, humanitarians need to be cognisant that our limitations are not only in research, but also in practice. Evaluations tend to identify long lists of lessons unlearned, partly because of the way emergency response is structured. Short assignments give us the impression that what we see when we are in a specific location is reflective of the entire epidemic. This can result in false narratives being presented as gospel truths. It is often repeated that during the West African outbreak, more people died from causes related to collapsed health systems than from Ebola itself. These assertions are based on models and not mortality data. In fact, two retrospective mortality studies [1 & 2] undertaken by MSF in Freetown and Monrovia failed to find excess mortality.

It is possible that these studies are wrong, but it is also possible that the emphasis on improved WASH and the mass distribution of anti-malaria treatments significantly reduced two of the leading causes of mortality (diarrhoea and malaria) and thus lessened the burden on health systems. This approach has direct repercussions for future epidemic response. With COVID-19, we have already seen funding diverted away from malaria programming, which might prove to have fatal consequences.

Ebola is a preventable disease. We have made so much progress when it comes to the medical tools we need to save lives, but we are still failing when it comes to the human skills that could be better informed by social science research. This paper clearly highlights important gaps in our understanding that will hopefully guide the future research agenda on this front.