Developing Sustainable Approaches to Shaping a Secure and Inclusive European Health Data Space
Disentis, July 28 to August 9
Nestled amidst the majestic Swiss Alps and the picturesque Disentis Monastery, the 2024 Summer Academy of the German Studientstiftung des deutschen Volkes and Max Weber Programm was an inspiring setting for over 70 passionate students. Among them, six vibrant working groups explored pressing societal matters, ranging from sustainability to digital health. One such group took on the challenge of envisioning a secure and inclusive European Health Data Space (EHDS).
A vision for the future of health data.
With the recent legislative work of the European Parliament and Council, the European Union is taking a visionary step towards establishing the EHDS. Beyond its benefits for patients and research, the EHDS has the potential to leverage digital technologies to significantly enhance the resilience and long-term sustainability of Europe's universal healthcare systems, provide a unique economic advantage, and set global standards in privacy, individual protection, and data governance.
For a European health data space that can be adopted by everyone (including patients!), individuals must rely on a system that embeds information security by design. A working group approached the question by leveraging the participants' diverse perspectives as stakeholders in a European Health Data Space.
Under the leadership of Philippe Page from the Human Colossus Foundation's Research Council, an international team of eleven students from diverse disciplines embarked on the mission to address key aspects of the EHDS. Their goal was to create a safe, accessible, and economically viable solution that would benefit patients and researchers alike.
Three guiding questions anchored their deliberations:
How might EHDS revolutionize medical research pathways via expanded data accessibility?
What measures could ensure the EHDS contributes to the EU economy without compromising health data privacy from commercial exploitation?
Which components constitute a secure, scalable infrastructure that meets the EHDS expectations and security demands? Would such an implementation prove sustainable?
The working group organized itself into three distinct focus groups, each addressing specific themes related to the broader topic. These subgroups operated autonomously throughout the sessions, diving into their subjects. Daily, the working group would collaborate in a collective session to share insights on primary/secondary data usage, discuss findings, and harmonize perspectives to manage risks in commercial usage. Through these collaborative efforts, the participants crafted a first draft of a position paper encompassing essential questions about the future development of the EHDS.
In conclusion, the Human Colossus Foundation thanks the organisers for creating space for bringing new ideas forwards in a manner respecting everyone’s perspective. The vision initiated during the retreat in Disentis Monastery is just the beginning. With plans to reconvene in 2025, the group aims to build upon its foundational ideas. Its aim is to create a safer, more inclusive European Health Data Space that sets global benchmarks in privacy, individual protection, data use in research, and data governance.