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Information about a project to research participants

Photo of two people having a conversation.

When research involves collecting data from identifiable persons the General Data Protection Regulation (GDPR) dictates that these persons are to be informed about the processing of their data. This is to be done when directly collecting data through for example interviews, questionnaires, or tests and/or when collection is conducted indirectly, via for example registers.

Anonymous or pseudonymized data

Anonymous data from a person is not to be confused with later pseudonymizing of data, such as when transcribing recorded interviews and, for example, leaving names and places out.

Only completely anonymous questionnaires, psychical notetaking of anonymous interviewees, access to registry data through ethical vetting etc. might be exempted from giving information.


The information needed is quite extensive so to help with this, there’s a checklist on what to add. How this information is worded is up to the project and the project also need to be prepared to give the information orally, if demanded by the research subject.

Your faculty’s Research Data Advisor might be of assistance in looking at your wording of the information to the research subject.

Ethical vetting

If you have a project that needs ethical vetting, the information to the research subjects needs to be submitted as part of your application. There is a specific template for such information at the webpage of the Swedish Ethical Review Authority. Please observe that the application, as well as the information to the research subject, needs to be in Swedish. If you are anticipating English-speaking research subjects, an English translation can be added as well although it is the Swedish one that will be assessed by the Ethical Reviewing Authority.

Extra support at the ENT faculty

If you are working at the ENT-faculty, support in deciding whether ethical vetting is needed, review of the wording in the application and/or the information to the research subject is given by the Research Data Advisor.

Additional information

In addition, to make sure that the project has fulfilled its information requirements there might be a need to information about right of access to public records, journals demanding access to raw data to be able to review the results before accepting an article and/or demands on open access or re-usability of the collected data.

Below you will find some more explanations about each post.

Virtually all documents, data, results etc. produced at the university are public documents, including research data. This means that if someone makes use of the constitutionally protected right to request such data, it must be made available in some way, unless there is a legal obstacle.  Such an obstacle may be that the information is protected by confidentiality or that it requires ethical review to be handled for research. This is something the research participant should be informed of along with the other parts in the checklist above.

In some research areas, it is common for journals to want to access raw data before an article is accepted for publication. This is in order to verify the results presented in the article. It is not obvious to a research participant that such a review can take place and it therefore needs to be specifically informed, in case it may be relevant.

It is advisable to try to find out at an early stage what the requirements of the journals you are interested in may be and to allow for the fact that these may change during the time between your data collection and possible publication. The project also needs to decide how far it is willing to go to achieve publication; if the limit is, for example, pseudonymised transcripts of interviews, it is important to be clear about this with the research participant.

Requirements for open access to both results and raw data, or that it should at least be available on request based on legal requirements that needs to be met, are increasing. In Örebro University ‘s Research Data Policy open or reusable data is also something that is highly encouraged.

If the research project has a requirement that data should be openly available/should be reusable, this needs to be specifically informed as this is not something that the individual research participant can be expected to know.