Case study - Norwegian Health Archive

CASE STUDY

Health data preserved in world-first archival project

| Norwegian Health Archive

The Norwegian Health Archive (NHA) opened in June 2019 with the mission to preserve every patient journal in Norway and provide valuable research material for future health research.

The Norwegian Health Archive Case Study

CHALLENGE The Norwegian Health Archive (NHA) carries the responsibility of ensuring that the nation’s health data lives on indefinite- ly. The NHA has begun a 10-year project to establish a long- term digital archive for medical patient records. This project has global significance for how data can contribute to under- standing a nation’s health. This is an ambitious project, collecting decades of records, in both analogue and digital form, and collating and treating all data in a single preservation system. The two main challenges of the project are ingesting the di- verse and large amount of data, and ensuring the preserved data is accessible for the future. After receiving the physical and electronic journals of de- ceased people from both public and private hospitals, the NHA digitises the analogue records, at a rate of 300,000 im- ages per day (300-450 GB). This creates a lossless electronic representation of the records, which then begin ingestion into the preservation system. Simultaneously, digitally born electronic health records (EHRs) are also processed for ingestion. Due to the sheer volume of digital files, ingestion of these files will occur over 10-15 years. After this initial ingestion of records, 50,000 EHRs will be in- gested annually, equating to 1TB per year (with each record approximately 20 MB). In addition to the data throughput, the solution must provide data access tools for researchers and next of kin on request, while maintaining the authenticity, confidentiality, scalability, quality, and retention of the content. To find a solution to fit the complex needs of the Norwegian Health Archive, an extensive requirement specification pro- cess was conducted, in collaboration with the Norwegian Na- tional Archive and Norwegian National Library. As a result of the process, a list of almost 100 requirements was made, asking the market for a state-of-the-art digital preservation system to solve these challenges.

SOLUTION Following a substantial procurement process, Piql won the ten- der together with Artefactual Inc, Canada. Our solution pro- vides an Archivematica based digital preservation system with complementary modules to ensure reliable ingestion and a flexible health register, compliant with OAIS.

The solution consists of three modules addressing the chal- lenges defined by NHA:

Ingestion module This module processes the data and automatically creates Sub- mission Information Packages (SIP). This ingestion module has been designed for handling three different types of data: born-digital health data (EHRs), digi- tised health files and complementary files. As the EHRs and the digitised records have different format specifications, the module includes a new tool that automatically monitors data validation, triggers data transformations, and creates OIAS compliant SIPs. For the complementary non-patient journal files, another in- gestion tool was developed and implemented to perform data validation, metadata descriptions and package creation on these files.

These processes support and ensure the authenticity and qual- ity of the SIPs.

The Norwegian Health Archive Case Study

Preservation module This module consists of a multi-pipeline workflow designed for handling the three different types of data. This includes func- tions designed to enhance performance, data validity and com- pliance with the Norwegian health regulations and demands for archival health packages. In addition, this preservation module also includes a new or- chestration tool to improve the efficiency of transferring large sets of SIPs. These processes enable the throughput required for handling the creation and storage of Archival Information Packages (AIPs) in the archive, as well as ensuring the sustainability into the future. Access module The access module ensures all files are fully searchable, allowing access for researchers and next of kin, while maintaining the confidentiality of the records. There are two tools that enable this, the first is a Patient Journal Index tool for monitoring, indexing, and accessing Norwegian health data, integrated with external registries for advanced search. The second is an inspection tool to open and search archive ex- tractions. This application allows inspection and download of submission, archival and dissemination information packages.

THE FUTURE The project began in April 2019, with delivery in June 2020 and full deployment in September 2020. Further, the parties have signed a 10-year support contract for the preservation system, ensuring a long and fruitful partner- ship between the two parties. This collaboration will also contribute to enhancing global awareness on how to safeguard and preserve electronic health records, a new yet important domain. Further, the workflow established by the NHA could also be adopted by other similar public institutions with a responsibil- ity to store digital files for the long term and guarantee future access for future generations to conduct research and gain in- sight to knowledge.

FOR MORE INFORMATION, PLEASE CONTACT US AS: E office@piql.com W www.piql.com

Overview of the NHA Digital Preservation System

Piql offers ultra-secure and long-term storage of valuable digital data. Head-quartered in Norway since 2002, Piql Services are offered to clients around the world by the use of technology that converts high-resolution film into a digital preservation medium for the future.

Piql AS • Grønland 56, N-3045 Drammen, Norway • tel +47 905 33 432 • office@piql.com • www.piql.com