EHDS, Opt-Out, and Trust: The Next Decade of European Health Data (Dipak Kalra)

In this episode, Dipak Kalra, President of the European Institute for Innovation through Health Data, joins Faces of Digital Health to break down the real progress (and real gaps) in European health data, from legacy “hybrid” paper/digital workflows to the underused potential of clinical decision support that depends on structured data.

We explore what EHDS changes—especially the promise of a standardized, downloadable patient dataset—and what it could unlock for patient-facing apps, analytics, and more active self-management. We also tackle the hard questions: how to protect citizens from misuse and scams, how opt-out choices might create bias in research and AI, why “beating clinicians with a stick” won’t fix data quality, and why delays aren’t just bureaucratic—they can translate into avoidable harm.

02:00 The State of Healthcare Data in Europe 07:59 Challenges in Data Interoperability 12:31 The Role of Patients in Data Management 16:37 AI and Data Privacy Concerns 22:01 Patient Consent and Data Usage 28:00 Optimism for the Future of Health Data 31:03 Optimistic Futures for EAGDS 33:02 Preparing for EHDs: Readiness and Challenges 35:48 Data Quality and Workforce Challenges 37:58 Delays and Future Discussions on EHDs 39:53 The Urgency of Health Data Readiness 42:38 The Evolving Role of Patients in Healthcare 50:19 Building Trust Among Healthcare Stakeholders 57:58 The Future of Healthcare Data Discussions