Contents of the registry
The Health Archives Registery (HAREG) contains medical records from the Norwegian specialist health service, including both somatic and psychiatric care, for deceased individuals.
Paper-based medical records are digitised when they are received by the Norwegian Health Archives, generally no earlier than 10 years after the patient's death. Extracts from electronic health records (EHRs) will also be included in the register.
The holdings overview shows which records have been received and digitised at any given time. See the overview provided by the Norwegian Health Archives.
From the Health Archives Registry, you can apply to receive complete digitised medical records, selected variables, or both. The digitised records consist of OCR-processed scanned images and are normally delivered as searchable PDF files with an OCR text layer. Records, or parts of them, can also be provided as image files (JPG) or as OCR text only. Other formats may also be available—please contact us if your research project has specific requirements.
Population and geographical coverage
The register contains medical records and related data for all deceased individuals who received treatment in the Norwegian specialist health service, regardless of nationality. This includes both Norwegian and foreign citizens.
Both public and private specialist healthcare providers are required to transfer paper-based and electronic medical records to the Norwegian Health Archives. This obligation generally applies 10 years after the patient's death, although earlier transfer may be agreed upon.
The requirement also applies to certain private specialists, substance abuse treatment institutions, and rehabilitation and habilitation centres. For treatment institutions that have only recently become part of the specialist health service, the obligation applies retrospectively, meaning they must also transfer all medical records relating to deceased patients.
Inclusion and exclusion criteria
The Health Archives Registry contains medical records for all deceased individuals who were admitted to hospital in Norway or received treatment within the specialist health service.
The register does not include records relating to living individuals or records from primary healthcare services.
Data collection period
Over time, all medical records from the Norwegian specialist health service will become part of HAREG after the patient's death.
The Health Archives Registry was established in 2019, and it will take time before records for the entire deceased population have been collected.
Paper records are continuously digitised, with approximately 300,000–400,000 records processed annually. The register will also be expanded with extracts from electronic health records.
The contents of the register span more than 150 years and continue to grow. Eventually, it will contain millions of medical records
Variables
Go to the variable overview to create variable lists and to see detailed information about the variables in this data source.
See the variable overview to create variable lists and view detailed information about the variables available in this data source.
The register has been supplemented with selected variables from the Norwegian Cause of Death Registry. These variables can be delivered together with data from the Health Archives Register.
Once electronic health records have been incorporated into HAREG, it will be possible to tailor the variables to individual research projects. Further information will be available once the first EHR extracts have been included in the register.
Data quality
Coverage as a measure of data quality is of limited value for describing the Health Archives Registry.
The target population consists of all deceased individuals who have been patients in the specialist health service, and the total size of this population is unknown. However, for records that have been received, the register has a very high level of completeness. This means that if the material you are looking for has been received and digitised, it is highly likely to be available in the register.
The contents of the Health Archives Registry are linked with the Norwegian Cause of Death Registry and the National Population Registry for internal quality assurance. Electronic health records will also be validated against information in the Norwegian Patient Registry.
Medical records from the period when systematic diagnostic coding and national personal identity numbers became standard are generally of higher quality than older material. Diagnostic coding became widespread around 1970 and became increasingly comprehensive and precise over time. All typewritten journal text is searchable within the register. The Norwegian national identity number was introduced in 1964, and records relating to individuals who died after that date generally contain complete personal identification information.
The oldest part of the register, particularly records from before 1920, is more variable in quality. Diagnoses are often recorded as free text, and much of the documentation consists of handwritten notes that cannot be searched electronically. Dates of birth may sometimes have been inferred from the patient's age, and the date of death is not always recorded in the medical record.
Open data
Updated statistics for the Health Archives Registry are available here.
Eligibility criteria for access to data
Criteria for data access
The data sources have different purposes and are regulated by different laws and regulations. In order to access information from the data sources, what you plan to use the information for must be in accordance with the purpose of the data source.
The types of approvals and documents you must submit to access information depend on what you are applying for, what you are going to use the information for and how you are going to process it. We therefore recommend that you take the time to familiarize yourself with the application guides before starting the application process:
Application guide for anonymous, aggregated data (statistical data)
Application guide for personally identifiable data
In your application, it is important to specify whether you are requesting complete medical records, variables, or both. The Health Archives Registry is well suited for linkage with other data sources.
Purpose
The purpose of the Health Archives Registry is to:
- receive and preserve patient archives from the specialist health service; and
- make health information in the archives available to researchers and next of kin in accordance with applicable confidentiality legislation.
This purpose is set out in Section 2 of the Health Archives Regulations.
Specific requirements
Since HAREG contains data only on deceased individuals, consent cannot be used as an exemption from the duty of confidentiality.
At present, there are no effective tools for automatically removing personal identifiers from digitised paper medical records. Personal information must therefore be manually redacted from each scanned page. Consequently, applicants requesting medical records from the Health Archives Registry must justify the need to receive directly identifiable information when applying for ethics approval and exemption from the duty of confidentiality.
Section 31, third paragraph, of the Health Archives Regulations states that obtaining consent from next of kin should be considered when data are used for research. Information about the deceased person's next of kin is sometimes recorded in the medical record. However, when releasing large volumes of records for research purposes, manually reviewing every record to identify next of kin—and subsequently notifying them where applicable—would require a disproportionate amount of work and is therefore not practically feasible.
Apply for access to data
You can apply for access to data from the registry via the application forms at helsedata.no.
When you apply for data held by the National Archives of Norway, your application is processed by the Norwegian Health Data Access Service (Helsedataservice). The requested data are made available directly by the Health Archives Registry.
Disclosure for other purposes
If you wish to access the medical record of a deceased relative—either as the deceased person's next of kin or because there are compelling reasons for access (for example, in connection with the investigation or treatment of hereditary diseases)—please see Helsenorge.no – Health Archives Registry.
Data processor and data controller
The National Archives of Norway, represented by the Director General of the National Archives, is the data controller for the Health Archives Registry.
The register is established pursuant to Section 12 of the Norwegian Health Register Act and is regulated by the Health Archives Regulations.
Prices
Several organisations are involved in making health data available, and you should therefore expect to receive more than one invoice.
The Norwegian Health Data Access Service (Helsedataservice) charges fees for application handling and case processing for applications submitted through helsedata.no, while the data controllers charge for preparing and making the requested datasets available.
See the fees for case processing charged by Helsedataservice.
The Norwegian Health Archives does not charge for the time spent extracting and delivering data from the Health Archives Registry.
For more information, please contact the Norwegian Health Archives (National Archives of Norway):
Prices for access to data
Helsedataservice charges for the processing of applications submitted via helsedata.no, while the data holders charge for data preparation and making the data material available. Helsedataservice and the data holders will issue separate invoices.