JMIR Publications

ABSTRACT

Digital transformation is rapidly advancing all sectors in society. It is widely understood as an evitable process where technology is used to modify organisation’s products and services and for creation new ones. Researchers have shown that digital transformation is a multidimensional process determined by human decisions based on ideologies, ideas, beliefs, goals and ways how technology is used. In health care and health, the end of digital transformation is Digital Health. One possible future is Digital Health based on business world dominating ideas and goals of digital economy and neoliberalism (e.g. privatisation and healthcare services, monetarization and commodification of health data and personal responsibility of health). In this study, a detailed literature review covering 560 research articles published in major journals was performed, followed by analysis of ideas, beliefs and goals guiding digital transformation and their possible consequences for privacy, human rights, dignity and autonomy in healthcare and health. Literature analyses have demonstrated that especially the transformation to Digital Health using ideas and goals of market economy and neoliberalism causes meaningful risks to human rights, privacy dignity and autonomy. To avoid this development, the authors used system thinking and system modelling and developed a system model for Digital Health called Human-Centric Digital Health (HCDH). It uses five views (ideas, health data, principles, regulation and organisational and technical innovations) to align with human rights and values, supports dignity, privacy and autonomy. Furthermore, for the HCDH the authors defined set of fundamental ideas, principles and proposals such as extensions to human rights, the principle of restricted informational ownership of health data and new duties for private organisations. Also new laws supporting the HCDH are proposed. The authors see that Digital Health should benefit people and patients, and prevent the loose of human rights, privacy, dignity and autonomy. The idea of HCDH and principles, standards, new regulations and responsibilities proposed by the authors form a promising solutions to make this true. Finally, they developed a system-oriented, architecture-centric, ontology-based and policy-driven approach to represent and manage HCDH ecosystems.