Access to Health Data Registers in Denmark
Danish Clinical Registries
Data about clinical quality are collected with the purpose of monitoring and raising the quality of patient treatment in the Danish health-care system. These data can, as well as all other public registers, be made accessible for research projects based on systematic protocols and approved according to the relevant legislations. Applying for access to data from a regional clinical database requires a list of demands to be obtained. A project description should be attached containing a description of the project explaining the rationale, purpose, methods, budget, publication plan etc. Furthermore, The Danish Data Protection Agency must approve the project.
National government registers – Danish Health Data Authority
Scientific Services (Danish: Forskerservice) at The Danish Health Data Authority is a joint port of access to pseudo anonymised data that the Danish Health Data Authority are responsible for. Scientific Services works to support health research in Denmark, by providing access to, as well as advising on, the use of the National Danish health data. Through Scientific Services researchers can obtain access to this data, either in a safe environment on the Research Machine (Danish: Forskermaskinen), or by ordering data extractions that are delivered directly to the researcher. To apply for access to data a list of requirements must be obtained. A project description and an extension description must be attached, containing information about which registries, variables, population and period that are being applied for. Furthermore, the Danish Data Protection Agency (Danish: Datatilsynet) must approve the research project, and the approval should be attached to the application. If the research project includes direct contact with humans or human biological material, The National Committee on Health Research Ethics must also approve the project.
To obtain access to data from Statistics Denmark specified requirements must be met. The research project must be associated to a Danish public research unit. Furthermore, The Danish Data Protection Agency (Danish: Datatilsynet) must approve the research project if data are linked to data from other authorities or registers. The applicant is responsible for payment of all the cost associated to the process. If data from Statistics Denmark are coordinated with data from the Danish Health Data Authority, the applicant should contact the Danish Health Data Authority and inform them who the contact person at Statics Denmark is, as well as the case number, project description, extension description, and approval from the Danish Health Data Authority, and/or The National Committee on Health Research Ethics.
Danish laws regulate the access to biological samples.
All register owners are subject to rules for treatment of personal data to secure high quality of patient treatment in Denmark. These These legislations include The Act on Processing of Personal Data (Danish: Persondataloven) and The Danish Act of Health (Danish: Sundhedsloven). These legislations ensure that data access is limited to relevant purposes.
Overview of Danish Health Data Registers
The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health