Launching the World’s First Centralised Ebola Platform
A4ID’s partners play a key role in the establishment of a global Ebola data platform to coordinate and improve the detection, diagnosis and treatment of Ebola Virus Disease.
Medical humanitarian organisation Médecins Sans Frontières, one of A4ID’s partners, has successfully supported the launch of a centralised database of clinical, laboratory and epidemiological data concerning Ebola Virus Disease, in conjunction with the University of Oxford’s Infectious Diseases Data Observatory.
The Devastating Impact of Ebola Virus Disease
Between December 2013 and April 2016, over 28,000 cases of the Ebola Virus Disease plagued West Africa, taking the lives of more than 11,000 people, mainly from Guinea, Liberia and Sierra Leone. Despite more than two-dozen outbreaks over the past 40 years, knowledge, treatment options and diagnostic certainty of Ebola remains inadequate. Though the scale and impact of the 2013-2016 outbreak was unprecedented, there remains limited empirical evidence to inform diagnosis, management and follow-up with suspected and diagnosed Ebola Virus Disease patients. This lack of aggregated evidence undermines the ability of the research community to leverage existing knowledge and develop an effective approach to combat the disease.
Despite the absence of a centralised repository for Ebola Virus Disease data, a wealth of clinical, laboratory and epidemiological information has been collected by a diverse range of organisations, including international agencies, national health ministries, local NGOs and individual Ebola Virus Disease treatment units. If appropriately collected and shared, this data could be used to improve responses to future Ebola Virus Disease outbreaks.
Médecins Sans Frontières (MSF) is an international association comprised of over 67,000 team members working in more than 70 countries, providing medical assistance to people affected by conflict, epidemics, disasters, or exclusion from healthcare. The organisation’s international reach ensured that it was well-placed to support the development of an online platform to share some of the wealth of available information surrounding Ebola Virus Disease that has accumulated across the globe.
Establishing the Governing Framework for a Centralised Repository of Ebola Virus Disease Data
MSF approached A4ID for legal advice and assistance with the launch of the platform, specifically to ensure that the platform’s contractual framework was compliant with MSF’s internal policies and the legal and ethical standards relevant to the research field. A4ID connected MSF with international law firm, CMS Cameron McKenna Nabarro Olswang LLP (CMS), who provided essential legal advice to MSF concerning the platform’s Governance Framework and Data Access Terms and Conditions, in addition to the Terms of Submission prescribing the relationship between data contributors and the platform itself. CMS also assisted MSF with contractual negotiations with other platform stakeholders.
Alice Proby, Legal Advisor at MSF, praised the CMS team’s “efficient, flexible, and dedicated” approach to the project, and remarked that their contribution was “highly supportive in the successful establishment of the platform”. The lawyers’ advice was “very succinct” and rendered a complex legal area “accessible and workable”. CMS’ involvement in the project “greatly improved the confidence” of MSF by legitimising some concerns that had previously been raised internally, and also helped to free up valuable time and resources for MSF
The Ebola Data Platform – the first platform of its kind to be established by a collaboration of multiple partners from across the globe – is now up and running.
Stakeholder Support and Avoiding Data Fragmentation
MSF and its partners on this project placed an emphasis on including stakeholders in the main countries affected by the 2013-2016 outbreak in the key decisions surrounding the platform’s development. This inclusive approach is to help ensure that the platform’s data is accessible to those treating patients on the ground, and to improve capacity to conduct research during future Ebola Virus Disease outbreaks.
It is also hoped the platform can mitigate some of the problems of data fragmentation that were encountered during efforts to halt the spread of Ebola Virus Disease in Sierra Leone, Guinea and Liberia as the crisis emerged during 2014. At this time, advisors on the ground observed significant divergence in data collection and recording practices, which hindered efforts at collating and analysing infection and treatment information, and an unwillingness in some quarters to share information internationally. Unifying data collection protocols and broadening access to raw and analysed data will vastly improve attempts to quell future Ebola Virus Disease outbreaks.
Building Capacity for Better Management of Global Health Risks
MSF’s work providing relief to victims of natural and manmade disasters makes a significant contribution to the advancement of the UN’s Sustainable Development Goals (SDGs), and in particular Goal 3, to ensure healthy lives and promote well-being for all at all ages. The related SDG Target 3.D seeks to strengthen the capacity of all countries, in particular developing countries, for early warning, risk reduction and management of national and global health risks. CMS’ pro bono assistance in the establishment of the Ebola Data Platform has contributed towards the attainment of SDG 3 and Target 3.D, while guaranteeing the protection of the rights and privacy of the individuals and communities from where the data originated.