WP 16. Data management systems

This area of work will be lead by Partner 1 (KI) with input from Partner 2 (Leiden), Partner 3 (Berlin), Partner 4 (Vienna) and Partner 14 (Manchester)

The strategy of the workpackage is to build on experiences of the participant group, existing formal standards from CEN/TC 251 on information structures and on experiences from the EU Information Society Technologies projects on security for health telematics, and other European projects with similar logistic problems, such as the TWIN Project. The first 18 months of the project will include the development of a detailed information system strategy for the project which will include an inventory of existing tools and standards for the above mentioned purposes. The following systems will be developed and taken into pilot use within the first 18 months:

•  Biobanking Information Management System (BIMS). This will include functions to support coding, collection and sampling procedures, bar coding and quality control. It will also need to address the IT aspects of access control, patient consent and ethical approval of use of information.

•  Laboratory Information Management System (LIMS). This will include functions to plan, perform and record laboratory results as part of a research project and particularly aimed at supporting the AUTOCURE project.

•  Research Exchange Information Management System ( REIMS ). This will include functions to communicate clinical as well as LIMS and BIMS derived information among partners of the project. The project will probably for the first time in a European Life Science research project use the recently developed set of CEN standards for the representation of clinical and laboratory information and develop additional implementation guidelines for the special information required by this research. The relevant standards are the General Purpose Information Components based on the global Reference Information Model, the Service Request and Report messages and the Electronic Health Record Architecture.

•  Security Infrastructure (SI) for information exchange. This will be a public key based infrastructure with certificates issued to the communicating parties of the project. This will be based on the standards available and use already existing services.