BBMRI-ERIC Podcast

BBMRI-ERIC has a podcast that explores the many aspects of biobanking and biomolecular research via our in-house experts, National Nodes and biobanks.

Episodes cover Quality, IT and ELSI topics that include webinars on contemporary issues and thoughtful conversations on new developments.

You can access the podcast via the embedded player below or on all the usual podcast platforms – Apple, Spotify, Radio Public and Google. Subscribe via your preferred platform to receive new episodes.

BBMRI-ERIC Podcast

“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.

bbmri-eric website

I am looking for information as

Researcher

Industry

Patient

Citizen

Member States

BBMRI-ERIC Podcast

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

Why does communicating about EHDS matter?

Further reading (in order of contribution):