Streamlining Access to Controlled Data

Streamlining Access to Controlled Data at the NIH

The National Institutes of Health (NIH) stores and facilitates access to many datasets, both open and controlled, with the goal of accelerating new discoveries and maximizing taxpayer investment in the collection of these datasets. Datasets that are shared through controlled-access mechanisms reflect the NIH’s commitment to protect sensitive data from--and honor the informed consent provided by--human participants in NIH studies. 

The NIH has created multiple, controlled-access data repositories to meet the needs of various researcher communities. However, as data access requests continue to increase, repositories continue to be established, and new mechanisms of providing data access are developed, it is apparent that opportunities remain to improve efficiency and harmonization among repositories to make NIH data more findable, accessible, interoperable, and reusable (FAIR) and to ensure appropriate oversight when data from different resources are combined. 

To address these issues while ensuring necessary protections remain in place--and to identify other issues--the NIH Controlled Data Access Committee Working Group is organizing a series of webinars and a Request for Information to seek community feedback. Insights and observations from this summer’s efforts will be synthesized and shared with the NIH Data Science Policy Council and the NIH Scientific Data Council.

We encourage you to visit this page over the next several months to stay updated on these activities and opportunities to share your thoughts with us. 

Past Webinars

The NIH hosted a webinar and three breakout sessions in July 2021 to address the challenges of opportunities surrounding streamlined access to controlled data at NIH. Recordings of each event are below.

July 9: Webinar on Streamlining Access to Controlled Data at NIH: Tackling Challenges and Identifying Opportunities  Watch the recording

July 22: Breakout Session on "Making Controlled-Access Data Readily Findable and Accessible" Watch the recording

July 26: Breakout Session on "General Opportunities for Streamlining Access to Controlled Data" Watch the recording

July 28: Breakout Session on "Addressing Oversight, Governance, and Privacy Issues in Linking Controlled Access Data from Different Resources" Watch the recording