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.
The information system is coordinated by the Infectious Diseases Data Observatory (IDDO), an international research network based at the University of Oxford, UK, and is expected to launch by the end of the year. At a meeting to discuss Ebola on 7–9 September in Conakry, Guinea, the team heading the platform will seek input from West African scientists, health officials and advocacy groups.
“We are looking for West African leadership in this initiative,” says Laura Merson, associate director of the IDDO.
Africans must be involved in the platform’s creation so that they can not only use the existing data, but also improve their capacity to conduct research during future outbreaks, says John Amuasi, an infectious-diseases researcher at the Kumasi Centre for Collaborative Research in Tropical Medicine in Ghana and a member of the platform’s steering committee. A true partnership would also lessen the general public’s mistrust of scientists, he adds.
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.
Questions of control
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. Amuasi says that he would have liked the database to be hosted and curated in Africa, rather than in Oxford, because training and paying African researchers to manage the platform would teach them how to use the information and improve their ability to respond to future outbreaks in the region. But he adds that this seems unlikely, because it would raise the cost of the project, and the infrastructure already exists at Oxford.
Merson says that a copy of the database will be maintained in West Africa, although its exact location has yet to be determined. She adds that an African committee may be in charge of deciding who gets access to the data. And she says that fellowships are likely to be made available for West African students who want to work on the database.
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.”
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