This guide applies to projects that wish to extract and use health information in connection with quality work, research, innovation, and similar activities. The guide is not relevant to projects that can be carried out without the use of health information (i.e., projects that only use anonymous data). If the project is to collect health information that is in an identifiable form, this guideline should be followed, regardless of whether the information will be anonymized before or after project staff have accessed it.
This guide also applies to projects that will develop, test, or validate new technology based on artificial intelligence.
The guide covers all aspects of a project, including initiation, implementation, and closure, and is intended to ensure that they are conducted properly, in accordance with legislation, and in a problem-free manner.
The purpose of the guide is to provide advice and support for projects that want to extract data from UNN and/or test new technology in clinical use so that the projects can be carried out in a problem-free manner in all stages. It should be useful for technologists, researchers, physicians, and others.
Health information can only be used for explicitly specified purposes and only to the extent that the information is necessary to achieve those purposes. There may be different rules for data from different sources. For example, there may be different rules for data from patient records and data from other health registries. It must, therefore, be assessed whether the project's purpose is covered by applicable legal provisions that may provide a basis for the processing of personal data. The purpose of the guide is to ensure that such assessments are made and to provide guidance on them.
It may be the case that the project's purpose is already formulated in different words and concepts than those used in legislation. In such cases, it is important that the project can describe the connection between the project's purpose and the legal concepts of purpose. The guide also aims to clarify this. Clarification of the project's purpose is necessary to identify which rules on the processing of health information the project must adhere to. To identify the relevant regulations, the project must also clarify which sources it is desirable to obtain health information from.
The guide also aims to describe how data from UNN should be processed, including ordering, storage, analysis, and deletion.