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Following the same methods as for claims data from statutory insurers in NUM DAAeD, the WP
focuses on the integration of new data sources.
The legal basis for linking clinical data and VeDa is typically patient consent (e.g., the insurance
module of the Informed Broad Consent of the MII, and other study- and registry-specific consents).
In developing NUM DAAeD further, the various VeDa must be coordinated. The data must be
processed separately, and new consulting services for analyses must be developed. NUM DAAeD
can link data from various sources on a personal level and pass on the processed data via
NUKLEUS for study-specific use.
Work package 7 within ENRICH:
Consent and identity management is handled through a trusted third party (THS). Parallel
processes for data merging, processing, and output exist for clinical data via the DIC and NUM's
data management office and are jointly developed further.
A prerequisite for data use in research projects is a data usage application (usually via the FDPG)
and approval from the Use & Access Committees of the data providers. Data protection
requirements are met through project-specific pseudonymization.
Population and cancer registry data enable vital status and outcome follow-up after the end of
primary data collection. The health insurance data comparison supports health economic analyses
and the estimation of resource consumption as well as outpatient and inpatient utilization.
The functionality of the infrastructure, especially for long-term outcome data after the end of the
primary study, is validated in selected facilities of the BETTER CARE study. This study examines
the influence of risk- and needs-adapted follow-up care on the quality of life of 933 participating
breast cancer patients from 30 breast cancer centers.
Within the scientific consortium, the Institute for Social Medicine and Health Services research (ISMG) is responsible for WP 7.3: Claims data from private insurancees