English

General presentation

DEMOTIS brings together computer scientists and legal scholars. DEMOTIS stands (in French) for Collaborative Analysis, Evaluation and Modelling of Health Information Technology. The project experiments new methods for the multidisciplinary design of large information systems that have to take in account legal, social and technical constraints. Its main field of application is personal health information systems.

The design and implementation of large-scale infrastructure for sensitive and critical data faces new problems that can no longer be tackled using classical methods such as requirement analysis followed by functional design. From their design stage, these infrastructural projects are positioned in a tangle of legal provisions, technical standards, and societal concerns and expectations. When sensitive data such as health records are processed within centralised and interconnected architectures, unprecedented safety issues arise.

Two types of systems have been chosen for the investigation conducted in the DEMOTIS project: work will be conducted in priority on the infrastructure for the French personal medical file system (DMP) and secondarily on the data infrastructure for the research and public health networks associated with specific diseases (AIDS, cancer). This choice is motivated by the major social and economic stakes, the complexity of the legal context and the possible involvement of stakeholders in consultation processes.

Planning

DEMOTIS project description

At the heart of the DEMOTIS project is the aim to understand how the intrication between the legal and technical domains constrains the design of such data infrastructures. DEMOTIS consists of two interdependent facets: legal (health law, privacy or intellectual property law, for instace) and computer science (database security, cryptographical techniques for data protection). These two facets will be investigated in conjunction by the partners. A corpus of relevant legal and normative texts will be annotated jointly by lawyers and computer scientists. These interacting readings will use a Web 2.0 text annotation service developed by the industry partner in the project and published under a free / open source software license. Their aim will be to collate the various legal prescriptions that frame the digital personal medical files and epidemiological files and to analyse them in view of the state of the art of possible software implementations. They will result in an identification of the expected functionality for this type of infrastructures and of the corresponding technological challenges. Then, an evaluation of the adequacy of existing techological answers and an exploration of solutions based on new emerging techniques in the database and cryptography fields will be performed. Finally, a consultation of stakeholders will be organized to experiment and evaluate the benefits of involving a wider public in the design and specification of this type of information systems.

DEMOTIS is an academic research-industry partnership project. Its outcome will be a set of publications and recommendations, specifications, technology (implemented as free software Web services) and stakeholder concertation methods. A large part of these results will be potentially reusable in fields other than health data.