Session Overview:
Data governance in the health data ecosystem is a complex and multifaceted issue, with numerous stakeholders involved in data generation, collection, processing, management, access control, analysis, storage, and archiving. Each stakeholder group brings a unique perspective on how data should be managed, addressing key questions such as:
• How much access should be granted, and to whom?
• Who should serve as the custodian of health data?
• What are the appropriate security and transportation mechanisms for data?
• What constitutes ethical and appropriate onward use of data?
Layered over these considerations are legislative frameworks that dictate the permissible uses of data. These legal constraints vary depending on whether the data were generated in a research setting—where full informed consent is typically required—or within healthcare service delivery, where implicit consent allows data use specifically for patient care.
Session Format and Objectives: This interactive session will bring together invited representatives from key stakeholder groups within the health data ecosystem, including:
• Researchers and academic institutions
• Healthcare providers and health systems administrators
• Data custodians and policymakers
• Ethics and regulatory bodies
• Public and patient representatives