MSF initiative of proactive data sharing
Summary of article1
Location: Global
What we know: Data sharing in humanitarian contexts is important to build evidence but has practical and ethical challenges.
What this adds: MSF has developed a pro-active data sharing policy for routinely collected clinical and research data, governed by ethical principles. A scientific publications policy prioritises open access. The agency aspires to online sharing of research protocols and an open dataset.
Public health crises such as the spread of drug-resistant tuberculosis highlight the need for improved sharing of data. For humanitarian organisations, there is a lack of guidance on the practical aspects of making such data available.
Until 2012, decisions to share MSF data were made on an informal case-by-case basis on request. In 2012, Médecins Sans Frontières (MSF) decided to adopt a proactive data sharing policy for routinely collected clinical and research data. A recent article describes how this policy was developed, the principles underlying it, and the practical measures taken to facilitate data sharing.
A key starting point for the MSF policy were the principles in the Full Joint Statement by Funders of Health Research (see link below). The policy was adapted to the MSF context informed by consultation with the Wellcome Trust and the MSF Ethics Review Board and based on a template from the UK National Cancer Research Institute.
The ethical principles underlying data sharing in MSF relate to medical confidentiality, respect for the privacy and dignity of individuals, equity (balancing needs of practitioners/researchers/funders/other analysts/communities), efficiency, non-maleficence (highly sensitive data), social benefit and intellectual property (open access to research). Challenges to data sharing explored in the article relate to data collection and protection, ensuring MSF staff share data, ensuring data sharing is included in research proposals, data quality, and data preservation.
Recently, MSF has introduced a scientific publication policy that prioritises open access, and the agency is working on a policy for online sharing of research protocols. 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.
Key links
MSF data sharing policy (Dec 2103): http://www.msf.org.uk/msf-data-sharing
Access the Joint Statement by Funders of Health Research at http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/Public-health-and-epidemiology/
MSF’s institutional repository for its research publications: http://fieldresearch.msf.org/msf/
1Karunakara U (2013). Data Sharing in a Humanitarian Organisation: The Experience of Médecins Sans Frontières. PLoS Med 10(12): e1001562.doi:10.1371/journal.pmed.1001562
More like this
FEX: ENN’s Research Partner Brief
View this article as a pdf In February 2022, ENN published a short brochure highlighting the ways in which the organisation provides support and collaborates with its research...
FEX: Improving the quality of nutritional survey data worldwide: Putting Child Kwashiorkor on the Map Initiative
By Lauren Browne Lauren Browne is the Data Manager for the Kwashiorkor Mapping project and joined the team after interning with ACF-UK and Save the Children UK. She completed...
FEX: Methodological challenges for operational research in the humanitarian context
By Stephanie Stern and Melchior de Roquemaurel Stephanie Stern leads the Action Against Hunger LAB project which aims to reinforce the impact and uptake of knowledge. Before...
Research Partners
Emergency Nutrition Network : How we support and collaborate with research partners At ENN, we enhance the effectiveness of policy and programming by capturing and exchanging...
FEX: Food aid for nutrition: A landscape review of current research and implications for future studies
View this article as a pdf Lisez cet article en français ici By Maria Wrabel, Kristine Caiafa, Beatrice Lorge Rogers and Patrick Webb All authors are affiliated with...
FEX: Operational research in low-income countries: what, why, and how?
Summary of research1 A Lancet published article puts forward a definition of operational research, articulates its relevance to infectious-disease-control programmes, and...
en-net: Nutrition Advisor 60%, May to Sept 2016, Geneva
Médecins Sans Frontières (MSF) is an independent humanitarian organization providing medical aid to victims of man-made or natural disasters, epidemics and...
FEX: Management of At-risk Mothers and Infants under six months (MAMI): Update and direction
View this article as a pdf Summary of meeting report1 A two-day meeting of the MAMI Special Interest Group (SIG)2 was held on 12-13 December 2019, organised by Emergency...
en-net: Médecins Sans Frontières Spain is looking for a Nutrition Referent Advisor
MAIN OBJECTIVE OF THE POSITION S/he will contribute to define medical-nutritional interventions and strategies, also protocols to implement quality nutritional programmes to...
en-net: CNN article missing IYCFE lens
This is an unfortunate article that could use a high-level response. http://www.cnn.com/2017/08/12/opinions/global-breastfeeding-policies-opinion-lemmon/index.html Also...
FEX: Action Contre la Faim
Name Action Contre la Faim Address rue Niepce, 75014 Paris, France Year formed 1979 Telephone +33 (1) 43 35 88 88 Director Jean Luc Bodin Fax +33 (1) 43 35 88...
FEX: Mortality and causes of mortality in children 6-59 months of age admitted to inpatient therapeutic feeding centres in Niger
By Florence Tapié de Céleyran, Kerstin Hanson, Cecilia Ferreyra, Nuria Salse, Didier Tshialala, Cristian Casademont, Rebecca Grais and Helena Huerga View this...
FEX: Evaluation of the Supplementary Feeding Programme carried out in Marsabit District, Kenya, April-November 1997
Vincent Brown (Epicentre), Sylvia Carbonell (Médecins Sans Frontières) MSF implemented a nutrition rehabilitation programme in Marsabit District between April...
FEX: OptiMA study in Burkina Faso: Emerging findings and additional insights
View this article as a pdf Lisez cet article en français ici By Kevin PQ Phelan Kevin PQ Phelan is Nutrition Advisor at ALIMA, the Alliance for International Medical...
FEX: Letter on commercial production of RUTF, by Michel Lescanne
Dear Editor The widespread application of CTC (Community-based Therapeutic Care) in emergencies and stable situations raises the question of the availability of Ready to Use...
FEX: Factors affecting decision-making on use of combined/simplified acute malnutrition protocols in Niger, north-east Nigeria, Somalia and South Sudan
View this article as a pdf Summary of research1 By Naoko Kozuki, Mamadou Seni, Amin Sirat, Omar Abdullahi, Mena Fundi Eso Adalbert, Marie Biotteau, Jeanette Bailey, Amelia...
FEX: Cost analysis of the treatment of severe acute malnutrition in West Africa
Summary of Research Isanaka S, Menzies NA, Sayyad J, Ayoola M, Grais RF and Doyon S. (2016). Cost analysis of the treatment of severe acute malnutrition in West Africa. Matern...
FEX: Summary of Field Exchange Evaluation
From July to November 2012, the ENN undertook an evaluation of Field Exchange (FEX) use amongst its readers. The aims were to establish how FEX is used to inform programming,...
MAMI Global Network Coordination and Governance
MAMI Global Network Coordination and Governance The MAMI Global Network Strategy for 2021-2025 is now available here. An overview of the Network's governance structures and...
Eurosurveillance Ebola infant feeding research papers
A Eurosurveillance recent paper describes the experiences and outcomes of two Ebola virus discordant mother-child pairs admitted to an MSF Ebola Treatment Centre (ETC) of...
Reference this page
Summary of article (). MSF initiative of proactive data sharing. Field Exchange 47, April 2014. p37. www.ennonline.net/fex/47/msf
(ENN_1078)