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Session 2: Enabling citizens to be in better control of their own data

DAY 1 | 30 November 2021 | 14:30 CET (GMT +01:00)

session 2 2

Prepared with Matteo Melideo 

In partnership with the OPEN DEI and InteropEHRate projects.


📝 Session abstract


Today, citizens are sharing a multitude of personal data. When they accept to share data, they often accept conditions of which they are not always aware (due to the time, experience, skills and literacy needed for them to take control of the process). Up until now, the health domain was relatively well protected from these kinds of challenges, but now is in dire need of good and reliable data (for example, to better integrate care, train algorithms, or develop agile research patterns). New initiatives have been emerging that offer solid support to citizens to ‘enforce’ control over their own data while being in a position to make an active contribution to emerging societal needs.

This session will explore the opportunities offered by, and challenges of, two concrete examples of trust enforcement mechanisms which are often used in combination: data intermediaries (such as data cooperatives and data trusts) and dynamic consent.

Do you want to have an impact on the future of the European Health Data Space (EHDS)?

This session relates to two actions in the EHTEL position paper on the EHDS consultations: "Access to and exchange of data for healthcare" and "Access to and use of personal data for research"

🕐 Session Programme


► 14:30 CET Session Introduction

Matteo Melideo, Ingegneria Informatica & Director of the EHTEL Board

► 14:35 CET Data cooperatives: shaping together an ethical social contribution to the future of healthcare

Ernst Hafen, Institute of Molecular Systems Biology, Zurich

An 8 November 2021 EHTEL “Imagining 2029” webinar provided a first introduction to the concept of data intermediariesMIDATA was created in 2015. It provides a concrete example of an initiative which aims at supporting the foundation of regional or national cooperatives. It shares its data platform infrastructure and enables citizens to contribute to medical research and clinical studies. Ernst will explain the background that led to the foundation of MIDATA, its architecture, and the successful real-world project that uses the MIDATA data governance model.  From this experience, he will outline what data cooperatives have to achieve to become successful and fair players in the personal data economy. 


► 14:45 CET Dynamic consent: A user friendly and powerful solution to data reuse - The Dwarna example

Dr Sharmini Alagaratnam, Senior researcher, Healthcare programme, Group Research and Development, DNV

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used in the context of biobanking, it gives individuals access to information and control over determining how and where their biospecimens and data should be used. Precision medicine and clinical genomics, in particular, place additional needs on the consent process due to aspects such as secondary findings and impacts on other family members. Dynamic consent can help address these needs, yet widespread uptake is limited. Dr. Alagaratnam will provide insights on the barriers to implementation of dynamic consent, and how they can be overcome.

 ► 14:55 CET Moderated debate between panellists and the audience

  • Which types of intermediaries have the best potential?
  • Which data intermediaries can help to better connect data use and reuse?
  • Are data intermediaries an absolute “must” to “hook” the citizen into the new “data altruismparadigm?
  • What are the most probable scenarios for the years to come?
  • What can be the role of data brokers in overcoming digital divides?

 ► 15:10 CET Wrap-up by central moderator




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