NIH, CDC sign global pact on data sharing

Five federal health research agencies are among the 17 government and private groups that have agreed to share research findings on public health in a more timely and effective manner.

The Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the National Institutes of Health, and the Substance Abuse and Mental Health Services Administration are among the organizations that signed the agreement.

The goal is to share population data in ways that are equitable, ethical and efficient, said Mark Walport, director of Wellcome Trust, and Paul Brest, president of the Hewlett Foundation, in announcing the agreement Jan. 10.

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In recent years, agencies and organizations that fund public health research around the world have recognized barriers to sharing information, including concerns about balancing the needs of researchers, analysts, communities and funders and protecting the privacy of people and communities.

The funding agencies have held several meetings to agree on core principles for sharing data.

A number of problems remain, including the need to build an infrastructure and culture to support data sharing, providing incentives for data sharing and providing tools to analyze, store, secure and preserve the data, Walport and Brest said in the release.

"The commitment of so many leading funding agencies sends a strong signal that we are committed to maximizing the full potential of public health research data to generate better health," Brest said.

Other signatories to the agreement include the Bill and Melinda Gates Foundation, the Doris Duke Charitable Foundation, the World Bank and agencies in Australia, Canada, France, Germany, New Zealand and the United Kingdom.