Data4Diabetes - Swedish Health Data Space pilot with diabetes data using a MyData Operator infrastructure

Purpose and goal:

To support care and healthcare delivery, research, innovation, policymaking (e.g. during health emergencies), and help citizens control their own health data, the European Health Data Space (EHDS) proposes a secure framework for primary and secondary use of electronic health data use. This pilot has showcased a practical implementation model, rigorously vetted via a working solution together with academics and legal experts, to establish trust among ecosystem parties.

Expected results and effects:

This project successfully demonstrated a minimum viable product (MVP) for an end-to-end data exchange infrastructure, enabling trustworthy digital data sharing. Key stakeholders like academicians, legal experts have validated the project, which illustrates how personal health data can be exposed and consumed in a health dataspace with the control of the individual and without fear of non-compliance to data regulation.

The project has specified the key governance mechanisms that are needed to create trust in any data ecosystem. Approach and implementation: The project was managed through five work packages (WP). WP1: Project Management WP2: Building a network of networks to enable trust in the health dataspace (NordXdataspace, NXD)

WP3: Specification of a governance framework to create trust in a health dataspace (documented) WP4: Need owner validation workshops (experts gathered at Vitalis and KI)

WP5: Dissemination of results (published IEEE paper, NXD press release, validation workshops, on-stage presentations at Vitalis, IEEE conference and to EUDI wallet consortium, EWC)