Health data has immense scientific, societal, and commercial values, which provoke cyberattacks and black market targeting of this data. The sharing and utilisation of health data poses legal, ethical/privacy, and technical challenges, which significantly limit the realisation of these values. There is a structural deficiency in the conventional 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 different 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. As all parties can use a common set of technical and procedural protocols for data sharing, they can trade their rights, obligations, and relevant benefits in an equal stance.
The Health Democratisation project is 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 Digital, the Norwegian Computing Center, the Norwegian Directorate of eHealth, and Inland Hospital), international (Maastricht University, Katholieke Universiteit Leuven) research institutes, and project sub-contractors (TicSalut, Tecnalia, Lynkeus, and Kallistech).
The project has a budget of approximately 27 million Norwegian kroner to support 5 PhD/PostDoc positions in addition to the permanent research staffs with NTNU and its partners. Some of the project results are expected to contribute to the national health data infrastructure via the collaboration with the national project Helseanalyseplattformen.