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