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

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:

• faster progress in improving health
• better value for money
• higher quality science.

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.

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:

• Equitable: Any approach to the sharing of data should recognise and balance 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: All data sharing should protect the privacy of individuals and the dignity of communities, while simultaneously respecting the imperative to improve public health through the most productive use of data.
• Efficient: Any approach to data sharing should improve the quality and value of research and increase its contribution to improving public health. Approaches should be proportionate and build on existing practice and reduce unnecessary duplication and competition.

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

• Data management standards support data sharing. Standards of data management are developed, promoted and entrenched so that research data can be shared routinely, and re-used effectively.
• Data sharing is recognized as a professional achievement. Funders and employers of researchers recognize data management and sharing of well-managed datasets as an important professional indicator of success in research.
• Secondary data users respect the rights of producers and add value to the data they use. Researchers creating data sets for secondary analysis from shared primary data are expected to share those data sets and act with integrity and in line with good practice - giving due acknowledgement to the generators of the original data.

Longer-term aspirations

• Well documented data sets are available for secondary analysis. Data collected for health research are made available to the scientific community for analysis which adds value to existing knowledge and which leads to improvements in health.
• Capacity to manage and analyse data is strengthened. The research community, particularly those collecting data in developing countries, develop the capacity to manage and analyse those data locally, as well as contributing to international analysis efforts.
• Published work and data are linked and archived. To the extent possible, datasets underpinning research papers in peer-reviewed journals are archived and made available to other researchers in a clear and transparent manner.
• Data sharing is sustainably resourced for the long term. The human and technical resources and infrastructures needed to support data management, archiving and access are developed and supported for long-term sustainability.

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.

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:

• incentive-related
• capacity-related
• ethical
• technical.

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

• Pisani E, Whitworth J, Zaba B and Abou-Zahr C. Time for fair trade in research data. The Lancet 375, p703-705.
• Pisani E and Abou-Zahr C. Sharing health data: good intentions are not enough. Bulletin of the World Health Organization. Volume 88, Number 6, June 2010, 401-480.

The following funding organisations are signatories to the joint statement on sharing research data to improve public health.

• Agency for Healthcare Research and Quality (USA)
  Carolyn M Clancy, Director
• Bill and Melinda Gates Foundation
  Tachi Yamada, President - Global Health Program
• Canadian Institutes of Health Research
  Alain Beaudet, President
• Centres for Disease Control and Prevention
  Thomas R Frieden, Director
• Deutsche Forschungsgemeinschaft (DFG)
  Matthias Kleiner, President
• Doris Duke Charitable Foundation
  Ed Henry, President
• Economic and Social Research Council (UK)
  Paul Boyle, Chief Executive
• Health Research Council of New Zealand
  Robin Olds, Chief Executive
• Health Resources and Services Administration (USA)
  Mary K Wakefield, Administrator
• Hewlett Foundation
  Paul Brest, President
• INSERM
  André Syrota, Chief Executive Officer and Chairman
• Medical Research Council (UK)
  John Savill, Chief Executive
• National Health and Medical Research Council (Australia)
  Warwick Anderson, Chief Executive Officer
• National Institutes of Health (USA)
  Francis S Collins, Director
• South African Medical Research Council
  Ali Dhansay, President
• Substance Abuse and Mental Health Services Administration (USA)
  Pamela S Hyde, Administrator
• USAID
  Ariel Pablos-Mendez, Assistant Administrator, Bureau for Global Health
• Wellcome Trust
  Mark Walport, Director
• The World Bank
  Tamar Manuelyan Atinc, Vice President - Human Development Network

Supporting organisations

The following organisations have joined as partners in this initiative.

• Chief Scientist Office (Scotland)
• Creative Commons
• Emergency Nutrition Network
• UNICEF
• World Health Organization

• See our work on open research