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Existing Data Sources for Clinical Epidemiology: The PHARMO Database Network.
Josephina G Kuiper1,2, Marina Bakker1, Fernie J A Penning-van Beest1
1Department Research, PHARMO Institute for Drug Outcomes Research, Utrecht, the Netherlands.
The PHARMO Database Network links anonymous electronic health records from over 10 million Dutch residents, offering insights into the complete patient journey across diverse healthcare settings for research purposes.
Area of Science:
- Health Informatics
- Population Health Research
- Real-World Data Analysis
Background:
- The PHARMO Database Network aggregates anonymous electronic healthcare data from various Dutch primary and secondary care settings.
- It integrates data from general practitioners, pharmacies, hospitals, and clinical laboratories.
- Linkage with external registries like Cancer, Pathology, and Perinatal registries enhances data comprehensiveness.
Purpose of the Study:
- To provide a comprehensive view of the patient journey and healthcare utilization in the Netherlands.
- To enable longitudinal research on over 10 million residents, averaging 12 years of follow-up.
- To facilitate research access under strict privacy and governance protocols.
Main Methods:
- Utilizes a population-based network of linked electronic healthcare databases.
- Employs probabilistic linkage with validated algorithms for patient-level data integration.
- Collects longitudinal data from multiple healthcare settings and external registries.
Main Results:
- The network covers more than 10 million Dutch residents with an average follow-up of 12 years.
- Data is anonymized and linked across primary care, secondary care, and specialized registries.
- Access is restricted to PHARMO Institute researchers and academic affiliates, ensuring data privacy and governance.
Conclusions:
- The PHARMO Database Network is a valuable resource for population health research in the Netherlands.
- Its extensive, longitudinal, and linked data enables in-depth analysis of patient journeys.
- Strict governance ensures ethical and privacy-compliant research access.
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