Gearing Up for 2023: Implementing the NIH Data Management and Sharing Policy

Frequent readers of this blog will remember that back in October 2020, NIH issued its Data Management and Sharing (DMS) Policy to further our commitment to making the research we fund available to the public. Our strategic decision to make the effective date for the Policy approximately two years later led some to ask NIH “why wait so long?” while others asked “why not give us more time?” Fortunately, the answer to both these questions is the same. Our goal is to lead a cultural shift that makes data sharing the norm. The degree of that shift, for some, may vary.  For example, many data sharing policies are already in place and researchers currently sharing data will likely not need to significantly alter their approach. But prospective planning for how to share data (i.e., developing plans, requesting NIH funds) may be new for some. As such, it seemed reasonable that two years was the right balance of time to lay the groundwork  for implementation. Today I am excited to provide an update on what NIH is doing to make our data management and sharing efforts a success on the one-year mark prior to the Policy’s effective date.

Since the Policy’s release, NIH has continued its approach of meeting and seeking feedback from its stakeholders. For example, in April 2021, NIH supported a two-day National Academies workshop to share strategies for successful data management and sharing and identify areas of additional need for seamless policy implementation. Thanks to the success of this workshop, we were able to continue engaging the public on multiple related resources and issues, such as consent for data sharing, harmonizing the NIH Genomic Data Sharing Policy with the DMS Policy, and the discoverability of our data resources.  We also have been partnering with our colleagues in the NIH Office of Extramural Research to provide implementation updates at extramural-focused meetings such as last year’s Virtual Seminar.

As you may recall, when the DMS Policy was released, we asked the community what other types of information would be of value to help with implementation. Based on the feedback we received, we are releasing additional resources today and have plans for continuing to release more throughout 2022.

Today, NIH is:

Over the course of 2022, you can expect to hear more from us regarding resources, including:

  • Helpful tips for developing budgets in Plans describing data management and sharing
  • Updated information on principles for protecting research participant privacy and de-identification to help guide sharing of research participant data
  • Educational resources including webinars and potentially sample Plans
  • Plans for further harmonizing NIH’s data management and sharing expectations, particularly with reducing duplicative plan submissions

In addition to the above, during 2022 NIH will also continue providing supplemental funding for grantees to:

  • Improve the FAIR and Artificial Intelligence/Machine Learning-Readiness of their NIH-Supported Data
  • Align existing data repositories with FAIR and TRUST principles and evaluate usage, utility, and impact

This is definitely an exciting year for NIH, and we look forward to continuing our engagement with the stakeholder community throughout 2022. Make sure to stay tuned –there is plenty more to come as we work together to accelerate scientific discovery through effective data management and sharing.

Posted by Dr. Lyric Jorgenson, January 25, 2022

Lyric Jorgenson, PhD
NIH Associate Director for Science Policy
About Lyric

Stay Connected with OSP in 2022

Happy New Year from OSP! The year 2022 is shaping up to be an exciting one for NIH, and we expect continued engagement in the policy process to help pave the way.

To ensure you don’t miss any important information, stay connected and engaged with us by following our new Twitter page @NIH_OSP (https://twitter.com/NIH_OSP).  Additional ways to stay in the loop include following OSP on LinkedIn and subscribing to our Under the Poliscope blog.

Have questions?  Reach out to us at [email protected]

Back by Popular Demand: NIH Funding for Research and Capacity Building Efforts Related to Bioethical Issues

The NIH seeks to fund research on ethical considerations related to biomedical research and projects that support capacity building in bioethics. Over the past three years, the NIH Office of the Director has partnered with all of our Institutes and Centers to support projects spanning the wide range of intersections between bioethics and biomedical research. Note that this opportunity applies to both basic and clinical research (and everything in between), from ethical considerations surrounding emerging technologies to developing capacity to further engage research participants as partners in research. Applications will be accepted until March 17, 2022.

Interested in collaborating with a bioethicist or a biomedical researcher to apply? Check out this symposium for tips on establishing partnerships: https://videocast.nih.gov/watch=42402. 

For questions, please contact the NIH Office of Science Policy by email at [email protected]

NIH Issues Request for Information on Proposed Updates and Long-Term Considerations for the NIH Genomic Data Sharing Policy

On November 30, 2021, NIH published a Request for Information (RFI) on potential updates to the NIH Genomic Data Sharing (GDS) Policy to keep pace with evolving scientific opportunities and stakeholder expectations. Comments will be accepted through February 28, 2022. NIH will use the responses to the RFI to consider options to update the GDS Policy and to harmonize with the NIH Data Management and Sharing Policy.

For additional information, please also see the latest “Under the Poliscope” blog by Dr. Lyric Jorgenson, “Refreshing NIH’s Genomic Data Sharing Policy

For questions, please contact the NIH Office of Science Policy by email at [email protected]