On the basis of SKL’s basic proposal, SIR has developed a proposal for how patients can be informed about registration of data in SIR. Information must be provided to the patient.
Information for you, the patient, so that you can contribute to better healthcare!
By participating in the National Quality Register you will help to improve the care provided. The more people who participate, the more statistically reliable the results will be. We then make use of the results for the purpose of carrying out improvements.
The register contributes to improved quality
The quality registers contribute to new knowledge concerning the best treatment strategy and care in a large number of areas. The quality registers collect data on treatment and outcomes for patients nationwide. They can therefore be used to compare values between different regions, counties, hospitals and individual intensive care units.
You are protected by confidentiality
The information about you stored in the quality register is confidential and treated in the same way as medical records. The information will be removed when it is no longer required.
Your rights as a patient
When data from the registration is presented to the various departments in Sweden it is compiled together, such that it is not possible to identify individual patients. All data published openly via the internet is anonymised, including within the IT solution itself. In some cases, targeted research may be carried out based on data in the quality register. In such cases, any such research will first be reviewed and approved by a research ethics committee which will also consider what information should be provided concerning the study, as well as how any personal data may be processed. This also applies in the event that it becomes necessary to cross-check information in SIR with other quality or data registers.
Your data stored in the register is retrieved from the documentation of the care you receive at the intensive care unit, and from the population register.
You have the right to know what information concerning you is stored
To obtain an overview of what data is recorded in SIR, please contact Göran Karlström at Värmland County Council, who is responsible for this and will carry out data retrieval in accordance with Data Protection Ordinance regulations (contact details are provided below)
You are entitled to have your data removed from the register or opt not to be registered
The Swedish Intensive Care Registry:
Värmland County Council (Personal Information Officer for The Swedish Intensive Care Registry)
655 93 Karlstad
Telephone: +46 70 2747529
General information concerning the quality register can be found at: www.kvalitetsregister.se