Sharing research data to improve public health: full joint statement by funders of health research

Recent advances in information technology have revolutionised science - providing new opportunities for researchers to share data and build on one another's work.

Introduction

Informatics and the ability to mine large datasets and combine them with information from many other sources present a huge potential to advance developments in public health. The importance of data sharing in advancing health is becoming increasingly widely recognised, and has been strongly endorsed by the H8 group of global health organisations.

In some research fields - such as genetics and physics - data sharing is well-established and has accelerated the progress of research and its application for the public good. In public health research, however, while research collaborations are growing more common, the sharing of data is not yet the norm, even within the scientific community.

Much of the data collection that could improve public health research is expensive and time-consuming. As public and charitable funders of this research, we believe that making research data sets available to investigators beyond the original research team in a timely and responsible manner, subject to appropriate safeguards, will generate three key benefits:

Each funding institution will work within its own legal and operational framework, and we are committed to working towards these goals together. We intend to establish joint working groups where appropriate. We call on governments and other actors that generate routine health service statistics and other types of public health data to adopt a similar approach.

This statement establishes guiding principles and desired goals. It recognises that flexibility and a variety of approaches will be needed in order to balance the rights of the individuals and communities that contribute data, the investigators that design research and collect and analyse data, and the wider scientific community that might productively use data for further research.

The joint statement of purpose

Vision

We, as funders of health research, intend to work together to increase the availability to the scientific community of the research data we fund that is collected from populations for the purpose of health research (1), and to promote the efficient use of those data to accelerate improvements in public health.

Principles

Funders agree to promote greater access to and use of data in ways that are:

Goals

While we recognise that progress may be gradual as we develop mechanisms and resources consistent with these principles, we aim to work in concert to achieve the following.

Immediate goals

Longer-term aspirations

Notes

(1) The statement does not currently cover routinely collected clinical data, or public health data to which the signatories of this statement contribute no funding.

Development of the joint statement of purpose

In recent years, many of the major funders of public health research have adopted policies on data sharing. International institutions and major medical journals have also made declarations about the importance of increasing access to public health data.

In 2008, the World Health Organization and the Wellcome Trust initiated discussions about the development of a common Code of Conduct on the sharing of data of public health importance. The aim was to develop principles and targets that would meet the needs of researchers and science funders alike, while providing the flexibility for individual institutions to respond to different circumstances.

The Wellcome Trust commissioned an analysis of obstacles to data sharing, which concluded that obstacles could be grouped into four major areas:

Together with the WHO, the Wellcome Trust convened a meeting held in London on 6 October 2008 to discuss potential ways of overcoming these obstacles. Epidemiologists and data managers from several continents gathered with a number of representatives from governments, international organisations and major funders of public health research. Together, they suggested core principles for a Code of Conduct.

A draft version of the Code was then presented at the Global Ministerial Forum on Research for Health, held in Bamako in November 2008. Further discussions were held with groups interested in the implications of the Code throughout 2009. These included editors of major medical journals, and the funders and consumers of health research grouped in the H8 (which includes WHO, a number of other United Nations agencies and several major funders of public health research).

The Hewlett Foundation commissioned a paper looking specifically at data sharing issues from the point of view of foundations interested in capacity development in developing countries. 'The Lancet', the 'British Medical Journal', the 'New England Journal of Medicine',' PLoS Medicine' and 'Nature' all published commentaries calling for greater sharing of data of importance to public health, and 'Annals' and the 'BMJ' now require authors to provide a statement on what data, if any, are available to other researchers, and under what conditions.

The H8 published a paper on data sharing in January 2010 which committed to develop a Code of Conduct in data sharing. In April 2010, the World Bank announced that it would make its data base open access, and would adopt disclosure as the default position for both data and documents relating to lending.

The informal working group developing the Code were in active discussions with all of these partners. They also liaised with groups such as MalariaGen and INDEPTH that have been involved in increasing access to data generated by their research partners, and those such as UK Data Archive that have experience with developing infrastructure for sharing. Their contributions and experiences were used to develop a revised Code of Conduct.

The Foggy Bottom meeting

The revised Code was discussed at a high level meeting of research funders and partners from the research community that was convened by the Wellcome Trust and the Hewlett Foundation and held at Foggy Bottom, Washington DC on 25 May 2010.

Meeting participants felt that action to enable more effective re-use of research data was urgently needed, but legal and institutional constraints required a more flexible framework.

The joint statement is the result of those discussions and follow-on dialogue with the members of the Heads of International Research Organisations group. Signatories are committed to engaging with other funders of health research (especially those based in developing countries) as well as with other members of the research community in order to invite greater participation in discussion, faster implementation of agreed measures and more effective progress towards our common purpose.

References

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Topics

Data sharing

Sharing data helps researchers to access and build on new information and knowledge.

Influencing policy

Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.

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