Operationalizing Data Justice in Health Informatics

Abstract

There is a growing awareness of the need and increasing demands for technology to embed, be sensitive to, be informed by, and to be a conduit of societal values and ethical principles. Besides the normative frameworks, such as the Human Rights principles, being used to inform technology developments, numerous stakeholders are also developing ethical guidelines and principles to inform their technology solutions across various domains, particularly around the use of frontier technologies such as artificial intelligence, machine learning, Internet of things, robotics and big data. Digital health is one of the domains where the convergence of technology and health stands to have a significant impact on advancing sustainable development imperatives, specifically around health and wellbeing (i.e. SDG3). As far as digital health is concerned, what values and ethical principles should inform solutions in this domain, and more significantly, how should these be translated and embedded into specific technology solutions? This paper explores the notion of data justice in the context of health informatics and outlines the key considerations for data collection, processing, use, sharing and exchange towards health outcomes and impact. Further, the paper explores the operationalization of Mortier et al.`s Human-Data Interaction principles of legibility, agency and negotiability through a health informatics system architecture.