Patient Information and Rights

General Information about Data Collection

In the VIKING project, we collect data from neurophysiological examinations performed with specialized medical equipment (for example, nerve conduction studies, electromyography, electroencephalography). The purpose is to train artificial intelligence (AI) models that will benefit future patients.

Today, the data are stored securely at the different hospital laboratories, and include examinations from the late 1990s until today. We collect all historical examinations from the hospitals participating in the project (most hospitals in Norway). This means the database will be representative of the population and include all age groups.

We transfer and store the raw data from the medical equipment used during the examination, as well as important information about you and the examination itself, such as personal identification number, age, height, type of medical equipment, technical settings, hospital, and so on. Personal identification numbers are stored so that the database can be updated over time, and so that the data can be linked with information from national health registries, such as the final diagnosis.

We expect that the database will eventually include up to 500,000 patients and up to 1,000,000 examinations. Because of the large number of patients and the long time-span of the historical data, it is not practically possible to ask each patient for consent. We have therefore received approval to collect and use the data without individual informed consent.

Processing of Personal Data

We collect, store, link, and analyze the data. The processing of personal data may also include deletion and anonymization.

Data Security

All information is stored only in pre-approved environments for handling sensitive personal data (the Research Portal at the South-Eastern Norway Regional Health Authority, or Services for Sensitive Data at the University of Oslo). Personally identifiable information (such as personal identification numbers or rare diagnosis codes) is stored in a separate, access-controlled area. The project follows the “Norm for Information Security and Privacy in Health and Care Services” (v6.1). We apply strict technical and organizational security measures and follow the principle of data minimization.

Transparency

The database is created for research purposes, and individual participants are not contacted directly about the storage of their data. However, if you wish to access your data, or have them corrected or deleted, this is possible using your personal identification number. Please contact the principal investigator at uxnikq@ous-hf.no.
Important: Do not send personal identification numbers or other sensitive information by email.

Approvals

The project has been approved by the Regional Committee for Medical and Health Research Ethics (REK), is anchored in hospital leadership, has been recommended by the data protection officers at all participating hospitals, and has also received approval from the Norwegian Health Data Service (Norwegian Institute of Public Health) for linkage with the Norwegian Patient Registry (NPR).