About the workshop
This workshop will convene leaders and practitioners to compare how different clinical data sharing models handle data governance and protections, surface the most consequential barriers limiting data sharing today, and identify high-impact opportunities where the National Library of Medicine can play a strategic role in enabling responsible clinical data sharing for whole human health research.
Goals:
Overarching Goal: To develop actionable recommendations and inform the National Library of Medicine's strategic plan by identifying high-impact data governance strategies and the roles the National Library of Medicine can play in enabling responsible and innovative clinical data sharing for research.
Goal 1: Compare Data Sharing Models
Examine how different clinical data sharing approaches (distributed networks, repository-mediated sharing, centralized platforms) implement data governance and protections, and assess the tradeoffs of each approach.
Goal 2: Surface Critical Governance and Social Challenges
Identify the most consequential data governance (e.g., consent, legal, policy) and social challenges limiting clinical data sharing across existing models, including challenges related to stakeholder engagement (e.g., patients, provider organizations, researchers, and funders).
Goal 3: Identify Solutions and Opportunities for Alignment
Highlight areas where incompatible policies, access controls, consent frameworks, or institutional practices create friction and explore approaches to improve compatibility, interoperability, and data reuse. Solutions can include common policies and frameworks, recommendations and best practices, and identifying significant gaps that the National Library of Medicine should focus on.
Individuals requiring reasonable accommodations to participate in this event should contact Pat Smith, email: psmith@blhtech.com; cell phone: (202) 359-5326 at least 5 business days prior to the event.