Citizen Centred and Controlled COVID-19 data for reuse
C4Yourself aims to realise an ecosystem that enables a centralised overview and real control of a citizens’ own personal (health) data. Reusing Real World Observations and health data for better care, research, health innovation and policy is key to better health in general, pandemic preparedness and imminent cost savings. However, the generally accepted notion that ‘citizens should be in control of the reuse of their personal data’ remains a paper mantra unless we design and implement a user friendly, trusted and sustainable environment that allows the realisation of that ambition.
Technology components exist to reuse data for the common good and give citizens control of their own health data, but the landscape is fragmented into non-interoperable silos and the citizen is lost in a jungle of patient portals and developing personal health environments (PGO’s) without much incentive to participate. This project will bring citizens, research and development players, commercial partners including PGOs together in a critical mass and investigate a Proof of Concept to demonstrate effective citizen controlled capture and reuse of health data. Data will not be ‘shared’ in the classical sense but ‘visited’ for distributed analytics and can also be reused.
C4Yourself will investigate how to design an interoperable system, based on cutting edge, distributed technology, and how this can be made functional without classical software integration and by various independent vendors, avoiding vendor lock-in and rendering the system scalable and sustainable without single points of failure and consider all governance issues related to the use of such a system. At the end of the project we will have a safe and trusted system for the reuse of Real World Observations for better care, research, and policy, in which all stakeholders can participate and where multiple choices are possible for the citizen.