We Are: Co-creation of a citizen-centric data governance structure

Background: In our modern-day society data is present all around us. We capture data about ourselves through wearables and data is being captured about us through for example purchase tracking at the grocery market. In the current situation all this data is stored in separate data silos of data collectors, without the data subject being informed on what is stored about them and by whom. Especially in the healthcare sector, due to the personal nature of the data, people have a vested interest in what their data is being used for 1. Objective: The We Are project aims to change the governance of personal health data by proposing personal data spaces where each person can be in control of the use and re-use of their own health data. We are designing of a system of personal data spaces and to support people in using the system we propose a citizen-centric data governance model by defining in co-creation with citizens guidelines and directives to manage the access, control, and use of the data. Methods: In a first step, we organized a co-creation workshop with the Flemish patients' association, the Flemish general practitioners' association, and the Flemish network of hospitals and care homes. Together we defined essential data governance principles. Also, we evaluated in a workshop to what extent Flemish policy makers (Care, Innovation, and Digitalization) were able to take up such principles. Finally, we aligned these principles with existing data governance models described in scientific and gray literature. Results: We identified 4 principles that a governance model should align with to achieve a citizen-centric data governance model. The 4 principles identified are: Self-determination and solidarity, Quality and efficiency, Caring and equality, and Privacy and security. From literature it is possible to identify numerous governance models to manage digital data which consider the needs and wishes of people in various degrees: Common Data Spaces, Data Commons, Data Collaboratives, Data Sharing Pools, Data Cooperatives, Personal Data Sovereignty, Data Marketspace, Data Union, and Data Trust. Each of these models has its own specifications and when considering the 4 defined principles the following governance models aligned the most: Data common, Data cooperative, Personal Data Space, and Data Trust. Conclusions and Next steps: Although the governance models were found interesting, none of the models were fully compliant with the principles. To this end, we are currently consulting a representative group of citizens, healthcare professionals, policymakers, and technology companies to voice their perspective on a citizen-centric governance model. At the time of abstract submission this next step was not yet completed, but by the time of the conference the results should be available and insights on a citizen-centric data governance model will be presented.