Reinforcing the Health Data Infrastructure in Mobility and Assurance through Data Democratization

Health data has immense scientific, societal, and commercial values, which provoke cyberattacks and black market exploitation of this data. The sharing and utilisation of health data poses legal, ethical/privacy, and technological challenges, which significantly limit the realisation of these values. There is a structural deficiency in the current health data infrastructure regarding secure data sharing and trust management. In this project, we aim at a 'democratic approach' with a computational platform to incentivise parties in a health data ecosystem to define, negotiate, and manage their respective rights, obligations, and the benefits associated with health data in a trusted and efficient way. The plan is to enable parties to use a common set of technical and procedural protocols for data sharing where they can trade their rights, obligations, and relevant benefits. The Health Democratisation project will be coordinated by NTNU's Department of Information Security and Communication Technology (IIK), with participants from NTNU's Department of Public Health and Nursing (ISM), Department of Manufacturing and Civil Engineering (IVB), and Department of Computer Science (IDI). NTNU will also partner with several national (SINTEF Security, the Norwegian Computing Center, the Norwegian Directorate of eHealth, Inland Hospital, and the Norwegian Center for E-health Research), international (Maastricht University, Katholieke Universiteit Leuven, Chinese Academy of Science) research institutes, and project sub-contractors (TicSalut, Tecnalia, Lynkeus, and Kallistech). The project has a budget of approximately 27 million Norwegian krone to support 5 PhD/PostDoc positions in addition to the permanent research staffs at NTNU and its partners. Some of the project results are expected to contribute to the national health data infrastructure through collaboration with the national project 'Helseanalyseplattformen'. The 'Health Democratization' project is also in liaison with the EU H2020 project 'My Health My Data'. As of September 2021, the project's technological architecture and use cases / scenarios (recorded in the first Deliverable) have been defined and researchers are working towards secure health data negotiation and the data sharing platform's specification and technological design. As of November 2022, the project's technological platform design has the first version. As of November 2023, the project's technological demonstrators design has the first version.

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In this project we aim at architecting and engineer a democratic data transaction model. The idea is to insert a trust and incentive augmented layer on top of the existing data infrastructure, which performs the same protocol of device / data provenance, beneficiary rights and benefit negotiation, and operation rights configuration between any two / multiple parties involved in a data transaction. The following research questions will be answered through research efforts in this project. RQ1: What are the common elements that can be abstracted from diverse data transaction scenarios, and how to model them into functions and protocols applicable to all parties? RQ2: What benefit can be brought by modelling data sharing in a trading perspective and what are its impact on the social, ethical, and economic aspects? RQ3: How to model the risk and incentive for data mobility in an open environment with multiple parties of conflicting interests in rights negotiation? RQ4: How to automate the configuration and validation of policies and rights across parties? RQ5: How to technically engineer and evaluate the democratic health data infrastructure? The project will take advantage of emerging theories (conflicting incentive models, multilateral security policy, token economy, etc.) and technologies (blockchain, computational negotiation, privacy preserving methods, etc.) , and research on new theories and innovative technologies towards the data democratization goal.