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Online workshops: Health data altruism and citizens’ control

The purpose of the workshops is to discuss some of the most challenging topics on citizen-centric solutions and models for use cases of health data altruism/intermediary systems for data sharing, structures, and functions for the future EHDS.

TEHDAS work package 8 (WP 8 – Citizens) kindly invites the wider TEHDAS stakeholder community and TEHDAS partners to meet the WP8 Advisory Group members and WP8 key contributors at three interactive online workshops.

Use this registration link to register for the workshops.

For more information about the workshops, please contact:

Key topics of the online workshops:

Day 1, January 17

10:00-12:00 CET• Citizens’ control over data – How data altruism/ intermediary systems for data sharing ensure citizen-centric approach
• Real-life and citizen-centric solutions or models for use cases of data sharing
• How citizens can influence distribution of the revenues generated by secondary use of health data (e.g. improve health or benefit to society)
• Optimising benefits from data sharing mechanisms – How citizens’ participation in planning/implementation of data use can contribute to optimising benefits

Day 2, January 18

14:00-16:00 CET• Differences and analogies between data altruism and other data sharing practices
• SWOT of data sharing through data altruism and/or other data intermediary organisations

Day 3, January 19

14:00-16:00 CET• Update definitions, needs, solutions, experiences, and good practices of data altruism
• Enablers and obstacles
• Sustainability