The term anonymous aggregated data refers to information that has been grouped so that it is not possible to identify individuals. Depending on the context, such data sets may also be referred to as statistical or anonymized, often in conjunction with the terms “structured” or “tabular”.

Anonymous aggregated data falls outside the scope of the EU’s General Data Protection Regulation (GDPR). There is no requirement for a legal basis for processing or exemption from the duty of confidentiality in order to gain access to anonymous aggregated data from a health registry or survey, such as statistics or data files where the content cannot be linked to individuals.

Ikon

May have limited value

Truly anonymous data sets have few and broadly categorised variables, which means that the data may have limited value for research and health analyses. If anonymous aggregated data does not meet the needs of the project, consider applying for personally identifiable data instead.

Anyone can request access to aggregated data, as long as the intended use corresponds with the purpose of the data source. The purposes are stated in the descriptions of the data sources.

For linking aggregated data sets from different sources, you need to request separate data files from each data source. Linking aggregated data from multiple data sources can be a complex and time-consuming process.

It is not possible to determine in advance that a data set is in fact anonymous. Also, linking aggregated data from several sources will increase the risk of individuals being identifiable.

If you want to link aggregated data, it will be more appropriate as a rule to use the application form for requesting personally identifiable data. If you are unsure, we recommend that you read our guide to requesting personally identifiable information.

Ikon

Applying for linked aggregated data?

If you want to link aggregated data from multiple data sources, enter this as a comment on the application at the bottom of the form. Please note that this affects the processing time for your application.

We recommend that you spend some time exploring what relevant data sources exist, and the options and restrictions that apply to accessing them and using the data they contain.

Various pieces of legislation regulate access to different data sources, and whether and how their contents may be linked and processed. All requests for access will be assessed by the organizations responsible for managing the data (the ‘data custodians’) in line with their obligations and responsibilities under Norwegian law. We recommend that you familiarize yourself with the rules and regulations that apply to the specific data sources, before you request access.

Specific access requirements for the different data sets are given in the Data Access section of the data source pages. You will find an overview with descriptions of the data sources you can request access to here (in Norwegian).

You need to provide a brief description of the information you need and what you are planning to use it for.

When you apply for aggregated data, you should also provide a sample table that shows how you want the data presented, with your desired labelled row and column layout. This will help data custodians find the information you are looking for and streamline the process.

You’ll find a tool for creating lists of variables and descriptions of variables from selected data sources here. Information about variables from other sources will, in most cases, be linked in the description of the data sources. If you have created a variable list on helsedata.no, you must first download the list before you can upload it in the application form.

Can't find the variables you are looking for?

Describe the information you are looking for as precisely as possible and contact the data custodian if there are no descriptions of the variables available. You can also use ICD-10 codes.

Use the application form on helsedata.no to request information from data sources managed by the Norwegian Institute of Public Health, the Norwegian Directorate of Health or the Norwegian Cancer Registry. We recommend that you sign into your account before you begin filling out the application.

Other data sources that you find on helsedata.no have their own application forms. These forms can be found in the data source descriptions (in Norwegian).

We are continuously working to include all data sources on helsedata.no in the same application form.

Find data sources from:

All requests for access will be assessed by the individual data custodians in line with their information requirements and responsibilities under Norwegian law. 

Application processing at Helsedataservice

If you use the application form on helsedata.no, your application will be sent to Helsedataservice.

Helsedataservice is an organizational unit, temporarily located in The Norwegian Directorate for eHealth, which coordinates the processing of applications submitted through helsedata.no. Helsedataservice also offers guidance on filling out the application form on helsedata.no.

An application coordinator at Helsedataservice will review your application and verify that all necessary attachments have been submitted. The application will then be forwarded to case processing at the responsible data custodians.

Subsequently, the data custodians or Helsedataservice will contact you by e-mail.

Case processing

The data custodians have caseworkers who will process your application. They will contact you to clarify what kind of data you require, and to help make sure that the requested data are relevant to the purpose of your project.

The data custodian will process your application according the regulations of the individual data sources, health registries or health surveys.

In most cases, a decision is made for the application with a subsequent release of the data set within an agreed timeline.

Ikon

Be available to the caseworker

The caseworker who receives your application may contact you if there are any ambiguities in the application.

You may have to pay for the time it takes to process your application.

Pursuant to the regulations of the individual data sources, health registries or health surveys, the data custodians may charge for expenses incurred in connection with the administration, processing and delivery of data. The cost may vary between different data custodians.

Expected processing time

Processing time is 30 days after you have submitted a complete application.

The application is considered complete when it contains all the information and attachments that are necessary to assess and process your request.

Requests for complex statistics may take more time to process. Aggregated statistics based on linked data will in most cases have a processing time longer than 30 days.

If you need to report changes or amend your application after it has been submitted, we recommend that you contact Helsedataservice or the data custodians for guidance. Some changes may require you to submit a new application or submit updated documentation.

Describe the change you need and include the current case number. 

Send your request to service@helsedata.no or directly to the relevant data custodians:

The Norwegian Institute of Public Health (NIPH): datatilgang@fhi.no
The Norwegian Directorate of Health: helseregistre@helsedir.no
The Cancer Registry of Norway: datautlevering@kreftregisteret.no

The requested data can be provided to you in various ways, but will typically be sent by e-mail. Check that the table actually contains the data you have applied for.

Ikon

Missing data?

If you find that the files you receive are missing data, you should contact the last caseworker you were in contact with. This will help you obtain the missing data more quickly.

Please remember to let the caseworker know when you have received the data.