Médecins Sans Frontières/Doctors Without Borders is an independent global humanitarian organisation that provides emergency medical aid directly to people ‘affected by armed conflict, epidemics, natural disasters, and exclusion from healthcare… irrespective of race, religion, gender or political affiliation.’[1] It is largely independently funded and operates in approximately 70 countries.
The organisation has a global federated structure comprising of 26 self-governed associations, each of which is affiliated with one of five MSF Operational Centres: Barcelona, Paris, Geneva, Amsterdam, and Brussels, which align activities and messaging.
Streamlining and improving the sharing of research data collected by the organisation’s staff, including its field practitioners, both internally and with external third parties, has been a long-held wish on the part of MSF. After an initial exploration of the MSF’s internal data sharing capacity, the offices in the Netherlands and Japan jointly decided to develop a data sharing platform (DSP). They hired Link Digital to do the job.
MSF were keen for a solution that provided a repository for research data and facilitated hands-off sharing, while avoiding duplication of effort or increased administrative workload for researchers. This meant tying the new platform to existing MSF systems.
Link Digital built the DSP based on the Comprehensive Knowledge Archive Network (CKAN). The developed DSP fetches the data from the existing MSF REMIT system using the REMIT Application Programming Interface (API). This allows the new DSP to incorporate research data while building in appropriate risk/access levels.
While Link Digital has extensive experience in the application of CKAN for internal data catalogues, this was our first foray into the field of medical-related data. In addition, while MSF was seeking greater data sharing capacity, it had significant concerns related to data security and privacy, particularly around cloud security requirements for clinical data. To enable the sharing of this data while protecting people’s privacy, risk/access settings had to be added for each dataset, to determine which data are free to download or which require a request that would have to be submitted and approved.
Link Digital staff became part of a multi-disciplinary team that designed the new data platform. Our staff took part in a series of face-to-face meetings with MSF personnel to enable us to understand MSF’s data ambitions. We then provided advice on what could and could not be done within the existing CKAN structure and lent our expertise in designing and customising the DSP.
The DSP allows MSF researchers to have access either as individuals or in a group, enabling them to collaborate on the publication of data assets. Working with MSF staff, Link Digital augmented a CKAN-based data sharing infrastructure with Microsoft Azure’s cloud computing platform.
The core CKAN components used in the installation were:
In addition, the DSP installation included the following add on software components:
As part of MSF’s long-term objective to improve the provision of data to external parties, in addition to improving data sharing internally within MSF, the DSP will be specifically available to people outside the organisation. The platform aims to make data on a wide range of topics, including disease, emergency relief, water and sanitation, conflict, vaccination, and maternal and child health, more accessible by providing the tools to streamline publishing, and assist in the finding, sharing and using of data. The DSP includes guidance for uploading and downloading material, as well as research templates and tools for data management.
In addition to the more efficient storage of data and a reduction in the administrative burden placed on MSF researchers, the new DSP aims to:
Future plans
As of early 2024, when this case study was written, the new DSP is in a pilot phase and only contains research data from initiatives undertaken by MSF’s Amsterdam Operational Centre. The aim is to do a thorough evaluation of the platform post its pilot phase, to see what revisions must be made, after which point the other four Operational Centre’s will be encouraged to join the platform. The long term goal is for the DSP to become the centralised sharing facility for all MSF research data.
Link Digital remains on hand to help test the site and address bugs and will continue to provide advice and development based on its experience with internal data sharing platforms. “We hope that Link Digital will continue to provide advice and development based on its experience with other platforms,” said Johan Martens, manager of the joint project team that worked on the new platform. “The platform will most likely continue to evolve significantly in the coming years before it can find its final form. We need a reliable expert partner in this process.”
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[1] Médecins Sans Frontières. “About Us.” https://msf.org.au/about-us
