Towards a Culture of Data Sharing


One of many lessons to emerge out of the global COVID-19 pandemic is the critical importance of rapidly sharing data and managing infrastructure to maximize the utilization of data, meta data, and associated research results to address urgent health priorities. The National Institutes of Health (NIH) has long been on the forefront of making access to federally funded research results, including data and publications, available, as stewards of the biomedical research enterprise. Responsible management and access to data underlies rigorous and reproducible science; it enables validation of research findings, accelerates future research directions, and increases opportunities for collaboration and citations. Moreover, responsible data sharing contributes to public trust in the research enterprise, through fostering greater transparency and accountability, as well as maximizing the contributions of research participants.

While some disciplines within the biomedical ecosystem have a strong culture of data sharing and sophisticated data management practices, such a culture is not consistent enterprise wide. The recent release of the final NIH Policy on Data Management and Sharing is intended to spark that widespread cultural shift. This policy, updated for the first time since 2003, creates an expectation that investigators will share their data, and proactively plan for data management and sharing. The policy requires investigators to provide a data management and sharing plan, describing to the agency the how, where, and when research data will be shared. Plans will be assessed and ultimately become part of the terms and condition of the award, creating a mechanism to ensure the scientists will manage and share their data as described. Fulfillment of the plan (which is updatable as research projects evolve) will be considered when making future awards.

Recognizing that culture change does not happen overnight nor is it without burden, NIH deliberately created a long window of implementation, releasing the policy more than two years before the effective date (January 25, 2023). This two year window will be spent working with the stakeholder community and within the agency to ensure all of the tools and resources necessary to facilitate smooth implementation are in place. This includes already released guidance on elements of a data management and sharing plan, consideration for costs associated with data sharing, and information on how to choose an appropriate repository. We plan to work with program officers and the scientific community to ensure consistent assessment of plans and are working to ensure that the development of infrastructure for data management and sharing is aligned with policy expectations. NIH is also working to align existing data sharing policies associated with particular data types, such as genomic data, or programs, like the Cancer Moonshot, are in line with the final policy.

Opportunity in biomedical research has never been greater, and NIH believes strongly that enhancing expectations for data management and sharing allows maximization of that opportunity. This final policy has been many years in the making and has benefited greatly from feedback from stakeholders, ranging from Tribal communities to scientists and research institutions to groups representing research participants. We look forward to continue working with the community to make sure we are all ushering in the exciting new era of increased access to data together.

Check out my latest feature on the Velocity of Content Podcast Series with CCC’s Chris Kenneally below:

Sharing Data, Sharing Science

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Author: Carrie Wolinetz

Dr. Carrie D. Wolinetz is the Acting Chief of Staff, as well as the Associate Director for Science Policy and Director of the Office of Science Policy (OSP) at the National Institutes of Health (NIH). As leader of OSP, she advises the NIH Director on science policy matters of significance to the agency, the research community, and the public, on a wide range of issues including research participant protections, biosecurity, biosafety, data management and sharing policies, genomics and health, emerging biotechnologies, intellectual property and technology transfer policy, and the organization and management of NIH.
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