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ELSI experts provide their feedback on the HRIC Strategic Agenda in the Second Stakeholder Forum Workshop

Date: January 31, 2023

On 24 January 2023, HealthyCloud partners brought together roughly 20 ethical, legal and societal issues (ELSI) experts to discuss the potential services to be delivered from the Health Research and Innovation Cloud. This virtual workshop hosted by EATRIS-ERIC represents the second stakeholder workshop held to discuss the development of the HRIC Strategic Agenda. The workshop pursued a specific focus on engaging patient representatives, ethics committees and legal experts, and attendees were well poised to discuss the ELSI challenges that faces the community and how the services from the proposed HRIC could help address them.

Specific objectives included:

  • Reviewing the draft strategic agenda
  • Gathering input on the proposed services for the HRIC from the ELSI experts and patient/citizen representatives
  • Defining the timeline and actors to ensure that the feedback from ELSI experts and patient representatives would be reflected in the strategic agenda of the HRIC

The workshop began with an introduction by Gary Saunders from EATRIS and was followed by a presentation of the Strategic Agenda by Christian Ohmann from ECRIN and a group discussion. Moreover, there were break-out sessions on the HRIC proposed services moderated by the HealthyCloud WP8 partners.

Gary Saunders from EATRIS highlighted that:

In the complex landscape of huge EC initiatives such as the EOSC and the EHDS, the workshop provided a great opportunity to discuss with the ELSI community and to work towards building public trust in the systems to ensure that there is sufficient engagement for driving Europe’s personalised medicine agenda.