Citizen Centred and Controlled COVID-19 data for reuse

In C4Yourself we aimed to realize an ecosystem that gives real control to citizens over their personal health data and that, after consent, enables a centralized overview of outcomes. 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 realization of that ambition.  

C4Yourself has resulted in 2 proof-of-concepts. We have shown that data in different PGOs can be presented in the graphs similar to the ‘rijksoverheid corona dashboard’. In addition, we have shown that Long COVID patient questions can be asked to the federated system of PGOs. We have been in contact with several stakeholders, first to align the developments within C4yourself as much as possible with the stakeholders and second to communicate on the outcomes of the project, so that the concepts will be taken up by the community (e.g. Health-RI). In addition, we have implemented the consent principles of the ‘Gezond Akkoord’, which includes guidelines for consent and the governing principle of a health data cooperation to support persons on consent procedure in the functional and technical solutions of the project. 

The proof-of-concepts have also resulted in further technical implementation of the FAIR data train. For instance the FHIR data station is implemented by the different PGO companies in the project, the technical solution of the FAIR data train is well documented in github for reuse of the code and it is shown that several technical solutions (FHIR station and/or IDS station) can be visited applying the same logic.