OBJECTIVES: Translational medicine research needs a two-way information highway between 'bedside' and 'bench'. Unfortunately there are still weak links between successfully integrated information roads for bench, i.e. research networks, and bedside, i.e. regional or national health information systems. The question arises, what measures have to be taken to overcome the deficiencies. METHODS: It is examined how patient care-related costs of clinical research can be separated and shared by health insurances, whether quality of patient care data is sufficient for research, how patient identity can be maintained without conflict to privacy, how care and research records can be archived, and how information systems for care and research can be integrated. RESULTS: Since clinical trials improve quality of care, insurers share parts of the costs. Quality of care data has to be improved by introducing minimum basic data sets. Pseudonymization solves the conflict between needs for patient identity and privacy. Archiving patient care records and research records is similar and XML and CDISC can be used. Principles of networking infrastructures for care and research still differ. They have to be bridged first and harmonized later. CONCLUSIONS: To link information systems for care (bed) and for research (bench) needs technical infrastructures as well as economic and organizational regulations.
OBJECTIVES: Translational medicine research needs a two-way information highway between 'bedside' and 'bench'. Unfortunately there are still weak links between successfully integrated information roads for bench, i.e. research networks, and bedside, i.e. regional or national health information systems. The question arises, what measures have to be taken to overcome the deficiencies. METHODS: It is examined how patient care-related costs of clinical research can be separated and shared by health insurances, whether quality of patient care data is sufficient for research, how patient identity can be maintained without conflict to privacy, how care and research records can be archived, and how information systems for care and research can be integrated. RESULTS: Since clinical trials improve quality of care, insurers share parts of the costs. Quality of care data has to be improved by introducing minimum basic data sets. Pseudonymization solves the conflict between needs for patient identity and privacy. Archiving patient care records and research records is similar and XML and CDISC can be used. Principles of networking infrastructures for care and research still differ. They have to be bridged first and harmonized later. CONCLUSIONS: To link information systems for care (bed) and for research (bench) needs technical infrastructures as well as economic and organizational regulations.
Authors: Peter Jo; Manuel Nietert; Linda Gusky; Julia Kitz; Lena C Conradi; Annegret Müller-Dornieden; Philipp Schüler; Hendrik A Wolff; Josef Rüschoff; Philipp Ströbel; Marian Grade; Torsten Liersch; Tim Beißbarth; Michael B Ghadimi; Ulrich Sax; Jochen Gaedcke Journal: Sci Rep Date: 2016-10-18 Impact factor: 4.379