Workshop "Democratizing the Health Data Ecosystem: From Challenges to Solutions"

The digital transformation of healthcare relies, among other things, on the responsible and effective sharing of clinical data. While the potential is tremendous—enhancing patient care, enabling medical innovation, and making healthcare systems more efficient—real-world implementation comes with significant challenges.

This workshop places a spotlight on the real-world challenges of health data sharing, technical, ethical, regulatory, and organizational. By bringing together stakeholders from academia, industry, and the public sector, we aim to create an open forum where obstacles can be discussed, and lessons can be shared.The primary goal is to explore the complexities of sharing clinical data in practice, what has worked, what has not, and how we can move forward together.

At the same time, we will not lose sight of the opportunities: better diagnosis and treatment, streamlined workflows, increased efficiency, and accelerated innovation in research, new therapies, and AI applications.

Whether you're working to improve data infrastructure, navigating compliance, or experimenting with tools like synthetic data or federated learning, this workshop is an opportunity to engage with peers facing similar hurdles and to foster collaboration across sectors.

Workshop Goals

• Provide real-world insight into health data sharing practices
• Foster open discussion on challenges and practical solutions
• Encourage collaboration across academia, healthcare institutions and industry.
• Involve government and policy makers to adopt best practices and strategies
• Highlight diverse perspectives and lived experiences
• Spark new data sharing initiatives and partnerships

Workshop Structure

The workshop is divided into two main parts, each designed to encourage open discussion, learning, and collaboration:

Part 1 – Facing the Challenges Together

Session 1: Speed Presentations & Panel Discussion: Challenges Matter – Tell Us Yours!

In this session, our speakers will share their experiences and challenges with health data sharing, offering first-hand insights from research, healthcare, industry, and public sector perspectives:

• Thomas Geiger (SPHN): Leads initiatives at the Swiss Personalized Health Network to enable nationwide interoperability and data sharing in health research.
• Bebeka Cosandey (Research Center for Clinical Neuroimmunology and Neuroscience Basel, CLINNOVA Project): Leads Scientific Project Manager in Clinnova, an EU-wide, cross-border initiative advancing federated digital medicine and collaborative health data use.
• Elke Mittendorf (University Hospital Zurich, USZ): Brings hands-on experience from a Swiss hospital, addressing the practical and regulatory hurdles of clinical data sharing.
• Sibrand Houtman (Gesundheitsdepartement Basel-Stadt): Provides a public sector perspective on policy, governance, and data management in healthcare.
• Thirupathi Pattipaka (Novartis): Drives innovation in data use within the pharmaceutical industry, exploring solutions for secure and ethical data sharing.

The presentations will lead into a panel discussion moderated by Astrid Kiermaier (leader in Personalized Healthcare in early research and development; Roche), where together we will explore:

• How mistakes could have been prevented
• What could have been done better
• Key lessons learned from setbacks
• If running the project again, what would be done differently
• What should be avoided in the future

The panel will not only reflect on challenges but also provide practical insights and recommendations for moving forward.

The audience is invited to actively contribute questions and share their own experiences.

Session 2: Pitching Solutions

A series of brief presentations showcasing concrete solutions, either in use or in development, that address clinical data sharing challenges:

• Davidi Bachrach (MDClone)
• Alexander Karagyris (MLCommons) 
• Sabine Österle (SIB; SPHN)
• Philipp Mann (Owkin)

Part 2 – Real-World Examples: Turning Vision into Practice

This session highlights practical case studies of democratizing health knowledge from the perspective of two healthcare providers inside and outside of Switzerland:

• Bram Stieltjes (Head of Personalized Health Basel and Department Head, Research and Analytic Services at University Hospital Basel, Switzerland): Presents the implemented solution and related use case(s) exemplifying data sharing with internal and external parties. 
• Christopher Boehlke (Department of Clinical Research, University Hospital Basel): Presents two use-cases in palliative cares, where internal data extraction and exploration are crucial, and how the projects were expanded to other hospitals.
• Ronen Loebstein (Director of the Institute of Clinical Pharmacology and Toxicology, and ADAMS Data Center at Sheba Medical center, Tel Hashomer, Israel): Gives insights into their approach to data sharing and synthetic data use in clinical environments.

Networking Apéro

Join us afterwards for informal networking over drinks and snacks.