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A System Model and Requirements for Transformation to Human-Centric Digital Health
Pekka Ruotsalainen1, Bernd Blobel2,3,4,5
1Faculty of Information Technology and Communication Sciences (ICT), Tampere University, Tampere, Finland.
Abstract:
Digital transformation is widely understood as a process where technology is used to modify an organization's products and services and to create new ones. It is rapidly advancing in all sectors of society. Researchers have shown that it is a multidimensional process determined by human decisions based on ideologies, ideas, beliefs, goals, and the ways in which technology is used. In health care and health, the end result of digital transformation is digital health. In this study, a detailed literature review covering 560 research articles published in major journals was performed, followed by an analysis of ideas, beliefs, and goals guiding digital transformation and their possible consequences for privacy, human rights, dignity, and autonomy in health care and health. Results of literature analyses demonstrated that from the point of view of privacy, dignity, and human rights, the current laws, regulations, and system architectures have major weaknesses. One possible model of digital health is based on the dominant ideas and goals of the business world related to the digital economy and neoliberalism, including privatization of health care services, monetization and commodification of health data, and personal responsibility for health. These ideas represent meaningful risks to human rights, privacy, dignity, and autonomy. In this paper, we present an alternative solution for digital health called human-centric digital health (HCDH). Using system thinking and system modeling methods, we developed a system model for HCDH. It uses 5 views (ideas, health data, principles, regulation, and organizational and technical innovations) to align with human rights and values and support dignity, privacy, and autonomy. To make HCDH future proof, extensions to human rights, the adoption of the principle of restricted informational ownership of health data, and the development of new duties, responsibilities, and laws are needed. Finally, we developed a system-oriented, architecture-centric, ontology-based, and policy-driven approach to represent and manage HCDH ecosystems.
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