MSF opens up its medical data to humanitarian ends
January 23, 2014
Médecins Sans Frontières (MSF) has taken another bold step, becoming the first humanitarian organisation to commit to a policy of sharing its medical data, for the purposes of public health research.
MSF recently announced its intentions to allow researchers access to the clinical and research data it collects, as part of monitoring and evaluating its medical humanitarian programmes. The policy aims to encourage as wide an audience as possible to make use of the MSF data, while respecting strict ethical principles to ensure patients’ privacy and medical confidentiality.
“We have an imperative to ensure that the data we collect can be used for the greater public health good,” said Leslie Shanks, part of the working group who helped to develop the data-sharing policy. “This is particularly important for the communities from which the data originated. Many of these datasets come from populations that are neglected or largely inaccessible due to conflict or geography. By opening the data up to other experts to analyse, we hope that we can stimulate improvements in medical and humanitarian practices that we might not have had the capacity or resources to deliver.”
The move builds on a history of successes. Previous data-sharing efforts by MSF have helped to validate shorter follow-up times for treating sleeping sickness, and contributed to global recommendations for treating multi-drug resistant tuberculosis (MDR-TB), which formed the basis of revisions to World Health Organisation MDR-TB treatment guidelines.
Initially, it will be data from MSF’s treatment of these diseases, as well as from HIV, that will be included in the data repository – as they represent some of the most extensive clinical and research datasets that MSF holds. The final catalogue is still in development. All data that fall under the scope of the data-sharing policy will be eligible for inclusion. While MSF has the ambition to work towards providing full open access to some datasets, most data will be shared through a managed access procedure. Since MSF works largely with vulnerable populations, this managed access procedure will ensure that the safety of the individuals and communities involved is not compromised.
By making public its ambitions, MSF hopes to prompt other humanitarian actors to consider similar data-sharing initiatives.
“Our primary motivation for collecting data and conducting research is to improve MSF’s delivery of emergency medical aid,” said Shanks. “We need to use our resources wisely: balancing how we collect and maintain the quality of our data, while minimising the burden on staff at the front line of our humanitarian relief efforts. I hope this initiative will stimulate further thought, and encourage responsible high-quality data sharing and analysis, to improve the lives of those populations most in need.”
Link to full article in PLOS Medicine: http://dx.doi.org/10.1371/journal.pmed.1001562