Data Sharing in a Humanitarian Organization: The Experience of Médecins Sans Frontières

Summary points:

• Public health crises such as the spread of drug-resistant tuberculosis highlight the need for improved sharing of data. For humanitarian organizations, there is a lack of guidance on the practical aspects of making such data available.
• In 2012 the medical humanitarian organization Médecins Sans Frontières (MSF) decided to adopt a data sharing policy for routinely collected clinical and research data. Here we describe how this policy was developed, the principles underlying it, and the practical measures taken to facilitate data sharing.
• The MSF policy builds on the principles of ethical, equitable, and efficient data sharing to include aspects relevant for an international humanitarian organization, in particular concerning highly sensitive data (non-maleficence), benefit sharing (social benefit), and intellectual property (open access).
• There are aspirations to create a truly open dataset, but the initial aim is to enable data sharing via a managed access procedure so that security, legal, and ethical concerns can be addressed.