25 - ELSI Dialogues: Communicating with patient citizens on implementing the European Health Data Space (EHDS)

“Without the patient citizen’s data, there is no future for research.”

Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.

The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” - which will serve research, innovation, policy making and regulatory purposes. 

The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data. 

Why does communicating about EHDS matter?

Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?

This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.

The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.

Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.

Further reading (in order of contribution):

• BBMRI-ERIC ELSI: bbmri-eric.eu/elsi/
• EHDS2Pilot Project: ehds2pilot.eu
• Spanish Research Council: csic.es/en/csic
• European Patient’s Forum: eu-patient.eu
• ELGA: elga.gv.at
• Kristiania University: kristiania.no/en/about-kristiania/employees/school-of-communication-leadership-and-marketing/departement-of-communication/audra-diers-lawson/
• CPME: cpme.eu
• EFPIA: efpia.eu
• Digital Europe: digitaleurope.org
• French Health Data Hub: www.health-data-hub.fr/
• FINData: findata.fi/en/
• MyGenome Portal: portaal.geenidoonor.ee/sisselogimine
• German Portal for Medical Research Data: medizininformatik-initiative.de/en/medical-research-request-health-data-centrally
• Health Data Lab: healthdatalab.de
• HIQA: hiqa.ie/about-us
• EHDS - European Commission: health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en