In this paper, we propose a health data sharing infrastructure which aims to empower a democratic health data sharing ecosystem. Our project, named Health Democratization (HD), aims at enabling seamless mobility of health data across trust boundaries through addressing structural and functional challenges of its underlying infrastructure with the core concept of data democratization. A programmatic design of an HD platform was elaborated, followed by an introduction of one of our critical designs-a "reverse onus" mechanism that aims to incentivize creditable data accessing behaviors. This scheme shows a promising prospect of enabling a democratic health data-sharing platform.

• Keywords
• data democratization, eHealth, health data infrastructure, privacy-enhancing technologies,
• Publication type
• Journal Article MeSH

A transformed health ecosystem is a multi-stakeholder coalition that collects, stores, and shares personal health information (PHI) for different purposes, such as for personalized care, prevention, health prediction, precise medicine, personal health management, and public health purposes. Those services are data driven, and a lot of PHI is needed not only from received care and treatments, but also from a person's normal life. Collecting, processing, storing, and sharing of the huge amount of sensitive PHI in the ecosystem cause many security, privacy, and trust challenges to be solved. The authors have studied those challenges from different perspectives using existing literature and found that current security and privacy solutions are insufficient, and for the user it is difficult to know whom to trust, and how much. Furthermore, in today's widely used privacy approaches, such as privacy as choice or control and belief or perception based trust does not work in digital health ecosystems. The authors state that it is necessary to redefine the way privacy and trust are understood in health, to develop new legislation to support new privacy and approaches, and to force the stakeholders of the health ecosystem to make their privacy and trust practices and features of their information systems available. The authors have also studied some candidate solutions for security, privacy, and trust to be used in future health ecosystems.

• Keywords
• ecosystem, personal health information, privacy, security, trust,
• Publication type
• Journal Article MeSH