Open Access to Federally Funded Research Data

Authors: David Crotty, Ida Sim, Michael Stebbins


Summary 

The majority of scientific research data in the United States is not shared, meaning that our nation has vast untapped potential to fuel scientific advances. The next administration can dramatically accelerate scientific progress by (i) requiring scientists who receive federal funding to share their research data and (ii) directing federal research agencies to coordinate to build an International Research Data Commons that allows research data to be easily discovered and shared.


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About the Authors

David Crotty, Ph.D. is the Editorial Director of Journals Policy for Oxford University Press. He oversees journal policy and contributes to strategy across OUP’s journals program, drives technological innovation, and serves as an information officer. Dr. Crotty previously managed a suite of research society-owned journals with OUP, and before that was the Executive Editor for Cold Spring Harbor Laboratory Press, creating and editing new science books and journals, along with serving as a journal Editor in Chief. Dr. Crotty received his Ph.D. in Genetics from Columbia University and did developmental neuroscience research at Caltech before moving from the bench to publishing. Dr. Crotty has been elected to the Boards of the Society for Scholarly Publishing, the STM Association, and CHOR Inc. As the Executive Editor of The Scholarly Kitchen blog, Dr. Crotty regularly writes about current issues in publishing.


Ida Sim, MD, Ph.D. is a primary-care physician, informatics researcher, and entrepreneur. She is a Professor of Medicine at the University of California, San Francisco, where she co-directs Informatics and Research Innovation at UCSF’s Clinical and Translational Sciences Institute, and is Director of Digital Health for the Division of General Internal Medicine. Dr. Sim is a global leader in the technology and policy of large-scale health-data sharing. She is a co-founder of Open mHealth, a non-profit organization that is breaking down barriers to mobile health app and data integration through an open software architecture. She co-developed CommonHealth, an open-source software suite bringing to the Android ecosystem the equivalent of Apple Health’s ability to access and share EHR data. Dr. Sim is also co-founder of Vivli, the world’s largest data-sharing platform for participant-level clinical trial data. In 2005, she was the founding Project Coordinator of the World Health Organization’s International Clinical Trials Registry Platform, where she led the establishment of the first global policy on clinical trial registration.


Michael Stebbins, Ph.D. is a geneticist and public-policy expert who served as the Assistant Director for Biotechnology in the Obama White House Office of Science and Technology Policy. He is currently the President of Science Advisors, a science and health consulting firm he founded in 2018 to provide science, technology, and public-policy guidance to private companies, philanthropies, and non-profit organizations. While at the White House, Dr. Stebbins’ work led to large initiatives across the Federal government to address antibiotic resistance, protect pollinators, improve veterans’ mental health, increase access to federally funded scientific research publications and data, promote the preferential purchasing of antibiotic-free meats, reform the regulatory system for biotechnology products, drive federal purchasing of bio-based products, and improve the management of scientific collections. Dr. Stebbins previously served as the Vice President of Science and Technology for the Laura and John Arnold Foundation, science advisor to the Obama Presidential Campaign, and on the Obama White House Transition Team. He is the former director of biology policy for the Federation of American Scientists and worked for U.S. Senator Harry Reid and at the National Human Genome Research Institute. Before coming to Washington, he was a senior editor at Nature Genetics. Dr. Stebbins is on the Board of the Value in Cancer Care Consortium and chair of the Board for Vivli. He serves on the scientific advisory boards for The Agenda Period, Amida Technology Solutions, Datavant, and KOKOMI.