Data Sovereignty in Action: Designing Building and Implementing a Radically Distributed Health Information System in Aotearoa New Zealand
This thesis examines the nascent, but rapidly maturing, ‘Web3' technology and seeks to understand the role it can play in realising data sovereignty in the context of the New Zealand health sector. The data sovereignty movement has generated its own momentum, particularly within the indigenous literature, but it is still missing a technical means by which data can be brought under the control and ownership of groups and communities. I argue in this thesis that one such Web3 technology – Holochain – offers this potential.
The research has three distinct phases. First, a health consumer panel survey was completed which demonstrated support for the ownership and control of personal health information and some dissatisfaction with the status quo. Respondents were also asked to imagine a data sovereignty-focused health information system, and what that should look like. These insights became user requirements, which were utilised in the second research phase to build a prototype Holochain app. Formal evaluation found it met all stated requirements for a fully distributed health information app. Having established that data sovereignty can be meaningfully supported by this new technology, I turn to look at what a radically distributed health information system would look like from a policy perspective.
This third phase was completed by interviewing experts from a broad range of disciplines. There are certainly many obstacles to implementation of data sovereignty utilising distributed technologies, but these primarily exist in the unravelling of the status quo. I frame this status quo as being entirely dominated by the extant model of data management, which relies on centralising data into silos – the centralised hegemony. There are also significant issues to overcome around maintaining essential government access to data, but I argue that this is merely a trust and social licence issue which government should in any case be focused upon.
Data sovereignty represents a paradigm shift in management and use of data. I contend that decentralised and distributed models have not been part of the discussion before now, because of the relative immaturity of these technologies. Having demonstrated in this research that it can work, however, I propose that the default to centralisation is urgently reconsidered. This research fills an important gap in the literature by demonstrating that a feasible technical solution for data sovereignty exists, and by specifying the policy steps needed to unravel the centralised hegemony.