DAOing It as a Collective: Designing the Future of Decentralised Personal Health Data Sharing

The public depends on healthcare institutions to protect and govern medical-related information. However, with increasing security breaches and compliance failures with data protection law, researchers have begun to explore the feasibility of Decentralised Autonomous Organisations (DAOs) as a way of reimagining traditional forms of top-down data governance. In this paper, we describe early findings from the development of a card-based approach for engaging the public in the design of DAOs for collectively governing health data. Following a public workshop, we reflect on how our methodological approach involved laypeople in practical discussions about DAO design elements, such as voting mechanisms. Through group conversations, we observed how values affected the kinds of decentralised organisational structures participants wished to engage in. In particular, our analysis has implications for the future directions of DAO design, by pointing towards flexibility and modularity for voting and proposal interfaces, scalability and balancing power in tokenised communities.