Health Democratization

Health data has immense scientific, societal, and commercial values, which provoke cyberattacks and black market targeting of this data. The sharing and utilization of health data poses legal, ethical/privacy, and technical challenges, which significantly limit the realization of these values. Fundació TIC Salut Social participates in this Norwegian project, coordinated by the Norwegian University of Science and Technology (NTNU) 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).

The Kick-Off Meeting of this project was held during 9^th and 10^th of September, 2019, in Oslo (Norway). During the meeting, the objectives and tasks of the project were reviewed, in order to plan in more detail the activities to be performed. Also, different workgroups were performed, analyzing the potential demonstrators and challenges ahead in the project.

Project kick-off meeting

This project also includes national partners in Norway (SINTEF Security, 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 Smart Valor).

Project description and objectives

There is a structural deficiency in the conventional health data infrastructure regarding secure data sharing and trust management. Then, this project proposes a democratic approach with a computational platform to incentivize 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 project aims to define, architect, implement, and evaluate a democratic health data infrastructure which is expected to incentivize all parties, including individuals, to prove, negotiate, and configure their rights associated with health data. The conflicts of interest among different parties can be reconciled through a set of automated mechanisms so that data can be mobilized across trust boundaries. The project has also the following secondary research objectives:

• A generic cross-party data transaction model that can abstract the common needs and functions, both technical and non-technical, from different health data sharing scenarios, and allow different parties to use the same set of protocols, so as to maximize the interoperability and minimize the cost.
• New knowledge and technical solutions to engineer the generic functional modules in the generic cross-party data transaction model.
• Incentive mechanisms, which can be built through technical (e.g., optimization of right negotiation strategies) or economic (e.g., token economy) approaches.
• Evaluation of the security and efficiency performance, and social, ethical, legal, economic impact from the proposed democratic data mobility approach.

Funding and results

Finally, the project has a budget of approximately 27 million Norwegian krone 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. The project is also in liaison with the EU H2020 project My Health My Data.