Summary
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.
Keywords
Translational medicine - health information systems - research networks - patient
identification - finance
