Amy Maxmen at Nature: “More than 11,000 people died when Ebola tore through West Africa between 2014 and 2016, and yet clinicians still lack data that would enable them to reliably identify the disease when a person first walks into a clinic. To fill that gap and others before the next outbreak hits, researchers are developing a platform to organize and share Ebola data that have so far been scattered beyond reach.
During the outbreak, for example, a widespread rumour claimed that the plague was an experiment conducted by the West, which led some people to resist going to clinics and helped Ebola to spread.
Merson and her collaborators want to avoid the kind of data fragmentation that hindered efforts to stop the outbreak in Liberia, Guinea and Sierra Leone. As the Ebola crisis was escalating in October 2014, she visited treatment units in the three countries to advise on research. Merson found tremendous variation in practices, which complicated attempts to merge and analyse the information. For instance, some record books listed lethargy and hiccups as symptoms, whereas others recorded fatigue but not hiccups.
“People were just collecting what they could,” she recalls. Non-governmental organizations “were keeping their data private; academics take a year to get it out; and West Africa had set up surveillance but they were siloed from the international systems”, she says. …
In July 2015, the IDDO received pilot funds from the UK charity the Wellcome Trust to pool anonymized data from the medical records of people who contracted Ebola — and those who survived it — as well as data from clinical trials and public health projects during outbreaks in West Africa, Uganda and the Democratic Republic of Congo. The hope is that a researcher could search for data to help in diagnosing, treating and understanding the disease. The platform would also provide a home for new data as they emerge. A draft research agenda lists questions that the information might answer, such as how long the virus can survive outside the human body, and what factors are associated with psychological issues in those who survive Ebola.
One sensitive issue is deciding who will control the data. …It’s vital that these discussions happen now, in a period of relative calm, says Jeremy Farrar, director of the Wellcome Trust in London. When the virus emerges again, clinicians, scientists, and regulatory boards will need fast access to data so as not to repeat mistakes made last time. “We need to sit down and make sure we have a data platform in place so that we can respond to a new case of Ebola in hours and days, and not in months and years,” he says. “A great danger is that the world will move on and forget the horror of Ebola in West Africa.”…(More)”