The sections below provide information about what to take into account in the analysis of the research data and when publishing your findings.
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Analysis of the data
The unauthorised use of data and data leaks can be prevented by securing information networks and physical locations, keeping software up to date and using antivirus measures. Identifying an individual in the research datais not considered harmful if the researcher does not abuse the data. Researchers must not disclose anything they have revealed through their research to the authorities or any third party. The data’s analysis must also follow the terms set for the use of the data by the use permit.
The EU General Data Protection Regulation will extend the duty to inform research subjects to research data that has been obtained from registers and other sources without consent from the data subject. For this purpose of informing, metadata must be maintained in the research data, according to the decree on personal data, and the subjects provided with the data regarding them upon request. The national Personal Data Act will allow some exceptions to these obligations.
The analysis of the data may reveal defects or errors in the original data source that are not related to the compiling of the data. In these cases, it is important to contact the original data controller and report the discovered inaccuracies, defects and errors.
Updating and expanding the data
Research data based on data obtained using a use permit can be used for the duration defined in the permit. If the research will take longer to complete than planned, the permit may be extended. The data may also need to be expanded as research progresses. Both extending the permit and expanding the data will require a new use permit application to be submitted.
The permit extension and data content update are subject to a fee that varies by permission authority and applicant. The charge will be less than the price of the original use permit application.
Only data with identifiers can be updated. Typically the data disclosed to a researcher is pseudonymised using a code key. The code key allows the data to be reverted into a format that allows new data to be added. The keeping of the code key should be taken into account in the original use permit application, or during the data compiling process at the latest.
Publishing the findings
All findings and results should be published using a level of accuracy that does not allow the identification of individual persons. Detailed data, such as place of residence or illness-related data must be grouped into larger units. All the data and combinations thereof revealed in published findings must always concern a large group of people.
The published version should always list the research’s data sources in detail. Listing the data sources used for research promotes the open use of health and welfare data. Clear details will allow anyone interested in the research use of certain data sources to better discover the research where the sources have been used.
When publishing your findings, remember that the terms of the use permit for health and welfare data require that the publications based on the research must be delivered to the authorising public authority.