- Main navigation
- CLIC & The CTSA Program
- News & Events
- Groups
- Common Metrics Initiative
- Education & Career Development
- Team Science & Collaboration
- Resources
- CTSA Program Projects & Initiatives
- Contact
- Search
The White House Office of Science and Technology Policy (OSTP) released comprehensive new recommendations to promote user data privacy for both public and private sector entities, focusing on mitigating bias and maximizing efficiency in an equitable way. The “National Strategy to Advance Privacy-Preserving Data Sharing and Analytics1” establishes clear objectives to aid the research, development, regulation, and implementation of ethical and sociotechnical solutions related to data collection and analysis2.
One of the key technical approaches for privacy-preserving data sharing and analytics (PPDSA) identified by the OSTP in their strategy is privacy-preserving record linkage (PPRL). As described in the strategy, “PPRL allows secure and private linkage of data related to an individual from different datasets1.” The National COVID Cohort Collaborative (N3C) was referenced as the largest national, free, and publicly available patient-level limited dataset in U.S. history using PPRL.
N3C uses PPRL to synthesize data from multiple different sources including electronic health records (EHR), claims data, and other administrative data to provide a comprehensive understanding of the impact of COVID-19 on individuals and communities. With the support of multiple institutions, disciplines, and scientists, the N3C data enclave has successfully harmonized more than 19 million patient-level records while ensuring the protection of sensitive data. In addition to paving the way for PPRL use, N3C has been crucial in providing the White House with information needed to support their decision making, such as the effectiveness of Paxlovid. With mentions in more than 70 successful funding applications and over 2,000 citations, the N3C Enclave is a prime example of the ability to promote user data privacy in conjunction with the advancement of collaborative research.
Ref:
1. National strategy to advance privacy-preserving data sharing and analytics. The White House. (2023, March). https://www.whitehouse.gov/wp-content/uploads/2023/03/National-Strategy…
2. Kelley, A. (2023, March 31). White House launches strategy to advance data privacy tech and Processes. Nextgov.com. https://www.nextgov.com/analytics-data/2023/03/white-house-launches-str…