Joint Statement on sharing research data to improve (global) public health

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

Introduction

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

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:

• 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.

Signatories to the joint statement

The signatories have committed to further the principles and goals set out in the statement, within the context of their legal and operating frameworks.

Agency for Healthcare Research and Quality (USA)Carolyn M Clancy, Director

Bill and Melinda Gates FoundationTachi Yamada, President - Global Health Program

Canadian Institutes of Health ResearchAlain Beaudet, President

Centres for Disease Control and PreventionThomas R Frieden, Director

Deutsche Forschungsgemeinschaft (DFG)Matthias Kleiner, President

Doris Duke Charitable FoundationEd Henry, President

Economic and Social Research Council (UK)Paul Boyle, Chief Executive

Health Research Council of New ZealandRobin Olds, Chief Executive

Health Resources and Services Administration (USA)Mary K Wakefield, Administrator

Hewlett FoundationPaul Brest, President

INSERMAndré 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

Substance Abuse and Mental Health Services Administration (USA)Pamela S Hyde, Administrator

Wellcome TrustMark Walport, Director

The World BankTamar Manuelyan Atinc, Vice President - Human Development Network

Supporting organisations

The following organisations are supportive of the vision in the joint statement and have joined as partners in this initiative.

UNICEF

World Health OrganizationThe World Health Organization is supportive of the joint statement of purpose on sharing research data to improve public health. The vision, principles and goals are aligned with our own statements on data sharing as set out in the WHO strategy on research for health [PDF], the Global Strategy and Plan of Action on Public Health Innovation and Intellectual Property [PDF] and the Call for Action on Health Data made by WHO and seven other Global Health Agencies. WHO will work with this group of research funders to promote greater access to and use of data in ways that are equitable, ethical and efficient.

Chief Scientist Office (Scotland)

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