This session discusses overarching dynamics of data governance, in order to address power asymmetries through structural approaches to our data. By bringing together both conceptual and practical approaches, we will explore models and potential sources of leverage for empowerment. You hear talks from Sean McDonald, Bruno Carballa Smichowski and Markus Niessen.
Trust & Trusts: The Mechanics of Data Governance
Sean McDonald, Digital Public
In this presentation, we’ll look at the three major sources of leverage in data ecosystems (access, sovereignty, and ownership) – and what each approach tells us about how to build data governance. Then, we’ll look at the mechanisms each system favors, and what that means for public interest data governance – and make a practical recommendation about ways forward.
Alternative data governance models: moving beyond one-size-fits-all solutions
Bruno Carballa Smichowski, Chronos / CEPN-Université Paris XIII
This presentation will distinguish four families of alternative data governance models and analyze the governance and business models characteristic of each of them. We will show that no one-size-fits all solution is either viable or suitable and that, on the contrary, the most appropriate data governance model depends on several intertwined features such as the type of data involved (personal/non personal, use values of the data, etc.), technical requirements to produce and maintain the databases or the market structures involved.
Data to the People – MIDATA Cooperatives
People have a right to a copy of all their personal data (GDPR, Data Portability). Since only they have the maximal aggregation power over their personal data citizens become important actors in a new personal data ecosystem. MIDATA offers a functional and secure data platform for people to store and manage access to their personal data. Governed as non-profit data cooperatives users do not only obtain data sovereignty, as members of the cooperatives they can also participate in the democratic governance of the cooperative and decide how revenues will be invested into project that benefit society at large. Several health related projects are currently running on the Swiss MIDATA platform. Furthermore we are helping our partners in Germany, The Netherlands, Belgium and UK to establish MIDATA cooperatives according to the same governance principles. Given that the need of patients and citizens are similar in different countries, studies established in one countries can easily be replicated on a MIDATA platform in another country. Thus the MIDATA cooperative model empowers citizens as actors in the digital society and contributes to the democratization of the personal data economy.
Session is moderated by: Shazade Jameson