Health data altruism and citizens' control TEHDAS WP8 ONLINE WORKSHOPS 17-19 JANUARY 2022
TEHDAS Work Package 8 (WP 8 - Citizens) kindly invites wider TEHDAS stakeholder community and TEHDAS partners to meet WP8 Advisory Group members and WP8 key contributors at 3 interactive online events, to discuss about some of the most challenging topics related to citizen-centric solutions and models for use cases of health data altruism/intermediary systems, structures and functions for the future EHDS.
"The TEHDAS Joint Action project develops European principles for the secondary use of health data. TEHDAS is being carried out by 25 European countries and co-ordinated by the Finnish Innovation Fund, Sitra.
The project started in February 2021. It is based on the European Commission’s Health Programme 2020. Work Package 8 (WP8) of TEHDAS focuses on citizens’ participation and data altruism."
More information about the Joint Action and the work packages: tehdas.eu
Key topics of the online workshops (webinars):
DAY 1 - Jan 17 (10:00-12:00 CET):
Citizens’ control over data - How data altruism/intermediary systems 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 - Jan 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 - Jan 19 (14:00-16:00 CET):
Update definitions, needs, solutions, experiences, and good practices of data altruism as:
Tool, way, use case, organisation, system or educational pathway, cultural shift and empowerment perspective for sharing health (related) data for secondary use purposes by and control of citizens
Activities, structures and functions for the future EHDS - Why dedicated health(care) specific regulation of altruism/intermediary systems is required for EHDS