Dakar — Working in Liberia during the Ebola outbreak in 2015, researcher Katherina Thomas noticed that while experts and aid workers had lots to say, no one was listening to ordinary people affected.
She and a team set about interviewing patients and community members about their experiences, creating an oral history archive which she believes could help responders struggling to gain the trust of Ebola-hit communities in Congo today.
Ebola has been spreading in eastern Democratic Republic of Congo since August in the world's second biggest outbreak, which has killed 1,354 people and surpassed 2,000 cases this week, according to government figures.
Aid workers have said they are struggling to contain the outbreak because of community resistance, with people refusing vaccines, concealing symptoms and attacking treatment centres.
"People are asking why community members don't trust the responders, but I think we should be asking, why aren't we trusting them?" said Thomas, currently a writer-in-residence at the Broad Institute of MIT and Harvard in the United States.
"They don't have a seat at the table, but their voices and insights are so crucial," she told the Thomson Reuters Foundation.
Community resistance was also a problem during the West Africa outbreak, which hit Guinea, Liberia and Sierra Leone, and the reasons were sometimes surprising, said Thomas.
She and her colleagues interviewed the young men who attacked an Ebola quarantine centre in Liberia in 2014 and found they believed they were saving their community, she said.
Although the context is different in eastern Congo, an active conflict zone, Thomas said some of the insights are relevant and she hopes to make the archive available for public use.
The Red Cross has been leading efforts to collect community feedback during the current outbreak with over 700 volunteers doing interviews by going door-to-door.
By analysing which comments are most frequent and where, they have been able to see how perceptions of Ebola are changing and what concerns need to be addressed, said Ombretta Baggio, senior advisor for community engagement at the International Federation of Red Cross and Red Crescent Societies (IFRC).
"If you start from where they are, they listen to you differently," Baggio said of the people affected.
Right now, for example, there is a rumour going around that in treatment centres patients are given a pill to make them die, she said.
The West Africa outbreak reached a turning point when communities themselves became engaged in stamping out the disease, rather than just aid workers, she said.
"I think sharing those lessons learned - not by responders but by communities - would be so powerful," said Baggio.
(Reporting by Nellie Peyton, Editing by Claire Cozens. The Thomson Reuters Foundation is the charitable arm of Thomson Reuters, and covers humanitarian news, women's and LGBT+ rights, human trafficking, property rights, and climate change. Visit http://news.trust.org)
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