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Médecins Sans Frontières (MSF) is pioneering an open-access approach within the humanitarian sector in the hope that other medical aid organisations will follow suit.
MSF decided to make the data its clinical and research staff collect freely available online, says a report published in PLOS Medicine last month (10 December). This is the first time a medical humanitarian organisation has fashioned a policy to openly share its data, MSF says.
By making its medical data open access, MSF will enable other scientists to conduct further research on them, potentially leading to health benefits for the vulnerable and neglected communities where MSF works, says Leslie Shanks, who led the development of MSF’s data-sharing policy.
One of the purposes of writing the PLOS Medicine article about their new policy was “to encourage other organisations to consider developing their own policies,” she says.
“Opening up data access for scientists in low-income countries is a good way to stop the brain drain.”
Ross Upshur, MSF’s ethics board
Ross Upshur, who sits on MSF’s Ethics Review Board, says: “It’s a brave, bold step and a necessary one. There’s a need for accountability within the humanitarian sector to monitor and evaluate their interventions and take appropriate steps to improve performance and their work.”
Jimmy Whitworth, head of international activities at charitable foundation the Wellcome Trust, also welcomes the move. “Obviously it’s difficult in emergency care and refugee situations to collect a lot of data and do research,” he says. “So to have data coming out in that area is going to be really valuable to improve what we’re doing.”
In particular, Shanks hopes that researchers from communities where MSF’s data originated will be able to access and use it.
Upshur says this could help prevent skilled professionals in developing nations from emigrating.
“A lot of research on TB, HIV or schistosomiasis almost inevitably requires that samples be exported to a higher tech lab somewhere in Europe or North America for analysis,” he says. “Opening up data access for scientists in low-income countries is a good way to stop the brain drain because you don’t have to leave the country to write publishable papers. You can access the data from where you are.”
Unlocking access to MSF data has already led to key developments in the fight against tuberculosis and sleeping sickness, says Shanks.
MSF and Epicentre, the charity’s research affiliate, shared research data on sleeping sickness with the Drugs for Neglected Diseases initiative, which resulted in the development of a step-by-step protocol for management of the disease that can significantly shorten the follow-up period for patients, she says.
Shanks tells SciDev.Net that, in addition, MSF shared its data on multidrug-resistant tuberculosis with external researchers who were conducting a large-scale analysis of treatment outcomes — the results of which directly influenced new WHO guidelines on programmatic treatment of drug-resistant tuberculosis.
Some of MSF’s data will be stored in a free-to-access online repository, while researchers will have to apply to obtain more sensitive data.
“Managed access will help us ensure that we have done all that is necessary to protect the individuals and communities where the data was collected,” says Shanks.
PLOS Medicine doi: 10.1371/journal.pmed.1001562 (2013)