Global R&D funding agencies commit to enhancing access to health research data

Seventeen major health research funding bodies have signed a joint statement, committing to work together to support the timely and responsible sharing of data for the purpose of health research, in ways that are equitable, ethical and efficient.

In contrast to some other research disciplines, data sharing is not yet the norm within the public health research community - a situation that threatens to limit both the progress of this research and its application for health benefit. However, increasing access to public health research data raises some concerns, which centre on the rights and responsibilities of researchers and the potential risks to research participants.

To address these issues, the funders, including the US National Institutes of Health, France’s INSERM, Deutsche Forschungsgemeinschaft (DFG), the Bill and Melinda Gates Foundation and the Wellcome Trust, have set out three core principles in the statement, underlining their commitment to data sharing. They agree to increase access to, and use of, data in ways that are:

• equitable: recognising and balancing the needs of researchers who generate and use data, other analysts who might want to reuse those data, and communities and funders who expect health benefits to arise from research;
• ethical: protecting the privacy of individuals and the dignity of communities, while respecting the imperative to improve public health through the most productive use of data;
• efficient: always sharing data in a way that improves the quality and value of research and increases its contribution to improving public health - adopting approaches that are proportionate, build on existing practice and reduce unnecessary duplication and competition.

The funding bodies say they recognise significant challenges need to be overcome to build the culture and resources necessary to support data sharing. The statement identifies immediate and longer term goals to address these, including building capacity and skills in the research community to manage and analyse data, particularly in low- and middle-income countries; creating incentives for researchers to share data; and developing the data infrastructure and technical tools needed to store, preserve and analyse research datasets safely and securely.

The signatories want other research funders to join as partners and the statement will remain open for other funders to sign.

The statement marks an important step towards improving access to data that have the potential to improve the lives of many millions of people worldwide, according to Mark Walport, Director of the Wellcome Trust “Whilst it is imperative that appropriate safeguards are in place to protect individuals and communities, we already have the tools to ensure research data can be shared safely and securely. Moreover, we have a duty to those populations who participate in research to ensure maximum benefit is derived. Funders and researchers can and must do more.”

The statement: http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/Public-health-and-epidemiology/WTDV030690.htm