Abstract
Context:
The Norwegian Health Archives Registry (NHAR) is a national initiative dedicated to digitising, centralising, and providing access to historical full-text patient health records (PHRs) for research purposes. Established in 2019, NHAR includes PHRs from the deceased population in Norway’s specialist healthcare services, offering a unique long-term data source for future research. NHAR has now digitised 1.7 million paper-based PHRs, covering medical history dating back to 1875. The registry is now expanding to include digital-born PHRs.
Aim:
This article describes NHAR’s innovation potential as a health registry, its data management processes, and the integration of artificial intelligence (AI) tools to facilitate data management and research in compliance with strict health data regulations.
Practice innovation:
NHAR’s data value chain includes structured metadata acquisition, large-scale digitisation and secure data delivery for research. The workflow includes a custom optical character recognition (OCR) tool tailored to Norwegian medical terminology, concept-based search tools for unstructured clinical full text and robust strategies for long-term data management. A novel AI-based de-identification system automatically detects and masks personal identifiers in digitised PHRs.
Lessons learned:
Despite these innovations, challenges persist in processing handwritten and historical PHRs due to OCR limitations and language-specific complexities. Key challenges include improving data quality, enhancing OCR accuracy and refining AI tools for information retrieval, data extraction and de-identification.
Conclusion:
NHAR offers significant potential for interdisciplinary research across various medical fields.
Implications for health information management practice:
NHAR establishes a foundation for secure access to historical health data and introduces advanced data management strategies to facilitate future research.
Keywords
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