Evolving trust in data sharing

18th January 2021

MyData Online 2020 conference | 10 Dec 2020, 15:45-17:15 CET

The ECHAlliance organised a session in the MyData 2020 Conference, with the key goal of discussing and validating the preliminary conclusions on citizen-controlled health data sharing governance, mostly developed under the DigitalHealthEurope project and presented in the Consultation paper under this theme.

Some of the points identified as “discussion starters” relate to the route to find a common pathway that engages different stakeholders’ perspectives and approaches in the discussion about data sharing uncovered that technology itself is not perceived as the main challenge. Citizens are increasingly aware of the value of their data, and want to know what, how and what it is used for. Regulations need to be clear about what data needs special protection.

Karolina Mackiewicz, ECHAlliance, chaired the session with a varied panel of experts representing different sectors and professional experiences:

  1. Carina Dantas, European Connected Health Alliance (ECHAlliance)
  2. Veli Stroetmann, Empirica Technology Research
  3. Zoi Kolitsi, Institute of Innovation Through Health Data (i~HD)
  4. Samuel Jacinto, Shared Services of Ministry of Health (SPMS)
  5. Tino Marti, European Health Telematics Association (EHTEL)
  6. Christiane Grünloh, Roessingh Research and Development (RRD)
  7. Isabelle de Zegher, B!loba, MyData4Pandemics Thematic Group
  8. Bogi Eliasen, Copenhagen Institute for Futures Studies
  9. Risto Kaikkonen, Solita

The main conclusions, summarised in key points, target the need to:

  1. Demonstrate and communicate better the added value of data-sharing
  2. Invest in tools and methods that enable citizens to access and control their data
  3. Invest in a culture of trust
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