*These partners are also participants of previous/ongoing EU-funded activities on citizen-centric health data related projects for clinical benefit, ensuring that the DUCOPOD project takes forward the initial work done in this area.

Abstract

As much as the world thinks there will always be data controllers, and users will always be data subjects, we believe it’s time to get radical for the paradigm shift. Making that shift possible technologically is the vision of DUCOPOD project. Various approaches over the decade have made it possible to empower users with full data ownership & control. At least 5 EU-funded projects MH-MD, FeatureCloud, Panacea, SERUMS & Curex, drive this new paradigm in healthcare using DLT for decentralization. All of these 5 pioneering projects directly feed into DUCOPOD via their participants joining our 17-member inter-disciplinary consortium of 7 universities, 4 SMEs 4 nonprofits & 2 ROs from 14 countries with a collective experience of 2066 EU-funded projects. Bringing diverse expertise DUCOPOD revolutionizes patient empowerment by introducing a new concept of Universal Compliance by Design (UCbD) based on the maxim that privacy, security & interoperability (PSI) are the key considerations behind any data regulating regime. If PSI is achieved algorithmically, than enforcing PSI by law/policy is redundant, and UCbD is achieved by default. UCbD not only solves the problem at hand of returning clinical trial (CT) data to the CT participants, but resolves a more formidable problem of breaking data silos that exist in healthcare systems.

The question is not when, how, but where the CT data should be returned, as there's currently no standard system where patients can receive their data & seamlessly share it across the care continuum. 'No system' is a bigger silo than structured silos of the existing systems. Returning the clinical data from one silo to another completely defeats the purpose itself. DUCOPOD components are under development in at least 2 H2020 projects currently under review.