Verbesserung des Record Linkage f\"ur die Gesundheitsforschung in Deutschland
Record linkage means linking data from multiple sources. This approach enables the answering of scientific questions that cannot be addressed using single data sources due to limited variables. The potential of linked data for health research is enormous, as it can enhance prevention, treatment, and...
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Zusammenfassung: | Record linkage means linking data from multiple sources. This approach
enables the answering of scientific questions that cannot be addressed using
single data sources due to limited variables. The potential of linked data for
health research is enormous, as it can enhance prevention, treatment, and
population health policies. Due the sensitivity of health data, there are
strict legal requirements to prevent potential misuse. However, these
requirements also limit the use of health data for research, thereby hindering
innovations in prevention and care. Also, comprehensive Record linkage in
Germany is often challenging due to lacking unique personal identifiers or
interoperable solutions. Rather, the need to protect data is often weighed
against the importance of research aiming at healthcare enhancements: for
instance, data protection officers may demand the informed consent of
individual study participants for data linkage, even when this is not
mandatory. Furthermore, legal frameworks may be interpreted differently on
varying occasions. Given both, technical and legal challenges, record linkage
for health research in Germany falls behind the standards of other European
countries. To ensure successful record linkage, case-specific solutions must be
developed, tested, and modified as necessary before implementation. This paper
discusses limitations and possibilities of various data linkage approaches
tailored to different use cases in compliance with the European General Data
Protection Regulation. It further describes requirements for achieving a more
research-friendly approach to linking health data records in Germany.
Additionally, it provides recommendations to legislators. The objective of this
work is to improve record linkage for health research in Germany. |
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DOI: | 10.48550/arxiv.2312.10093 |