Not ‘Just’ Data : Participatory Data Governance for Health Data Infrastructures, a Decolonial Agenda for Data Justice

Abstract

With the growing digitisation of healthcare services, health data infrastructures play a critical role in healthcare and medical research. Health data are relational in nature and can reproduce historical inequities and manifest colonial patterns, where Global North notions and agendas for healthcare and research are replicated. In this light, governance of health data infrastructures needs to be centred within the sociopolitical context of these infrastructures, promoting the data interests of communities, especially vulnerable and marginalised communities. However, current data protection frameworks that prioritise individual privacy rights are inadequate for addressing collective, context-dependent harms arising from data use. To address this governance gap, the article advocates for a shift from privacy-centric governance to a data justice approach, and seeks to layer data justice with a solidarity-based, decolonial approach. The theoretical and practical dimensions of this approach are explored through three key elements: constitutional, procedural and positional. Constitutional elements deal with the foundational principles or logic underlying the governance architecture of the health data infrastructures. Seen through a justice lens, these constitutional elements are geared towards acknowledging, preventing and mitigating inequities in healthcare and health data activities. Further, procedural elements are building blocks with the aim of embedding tangible mechanisms within governance architecture. Lastly, positionality is the connective tissue that weaves together the constitutional and procedural elements. It is understood as the inherently embodied nature of knowledge, knowledge creation and its processes. It brings forth the criticality of the situatedness of knowledge and power structures, and urges us to imagine governance that does not seek to escape perspective, but makes vantage points both explicit and answerable.