The primary care routine data registry BeoNet: health services and health economic research in COPD and ELD

Objectives:

Reliable primary care data are needed for health services and health economic research in lung disease like COPD and ELD. Within the German Center for Lung Research, the BeoNet- (“Beobachtungspraxen-Netzwerk”) Registry will gather full primary care routine data from electronic patient records for real-time monitoring as well as for longitudinal trans-sectoral cohort studies and combine these data with patient reported outcomes.

Methods:

A real-time, standardized collection of primary care routine data will be established. Basic claims data from electronic patient records of participating general practitioners, pneumologists and pediatricians as well as data on different aspects of care like on diagnosis, treatments and procedures, medication, disease management, treatment frequencies and accounting are accumulated, transferred via standardized interfaces and compiled for analysis.

Data on other healthcare utilization, health-related quality of life and further disease-specific parameters will be gathered by additional questionnaires and linked with the electronic health records.

Results:

Important milestones during the pilot phase of the BeoNet-Registry have been achieved so far: (1) project approvals by the ethics committees of Hannover and Munich as well as for the data security concept were obtained; (2) cooperation with software developers was initiated to ensure data extraction and transport; (3) specific questionnaires for additional data were selected, tested and adopted.

The ongoing recruitment of the network of surgeries and the construction of the data test-network has been initiated. Until now 51 general physicians agreed to participate, 91 are interested. Physicians engaged in specific health care research projects will recruit target-patients. Over 26.000 patient IDs and the coresponding data entries were transferred as a test dataset from the electronic patient records to the database. First queries are in progress.

Conclusions:

For the improvement of pulmonary healthcare strategies the BeoNet-Registry provides a quality-proved data base for standardized assessments of disease-specific costs, quality of life and for objective outcome evaluation.