Patient information on SIR

Information for patients on registration in 
The Swedish Intensive Care Registry

Purpose

The Swedish Intensive Care Registry records data on patients and their treatment. The main purpose of the register is to improve the quality of Swedish intensive care in selected continuously followed areas. The Swedish Intensive Care Registry shall also promote method development and research in intensive care, especially in epidemiology, but also other targeted areas where the participation of many centres is a prerequisite for carrying out high-quality scientific studies. In order to develop and ensure the quality of intensive care, we want to record data on patients' social security numbers, care contacts with us (including how patients came to us and where patients were discharged), diagnosis, treatment, some test results, and if possible later follow up the care with new contact with the patient.

Data in the register are taken from the care documentation during the intensive care period and the population register. Data from the registration are presented to the different departments in Sweden without the possibility to identify individual patient.

The Regional Board of Värmland has overall legal responsibility for the personal data in the Swedish Intensive Care Registry. The person with overall responsibility is called the central data controller. The healthcare units that enter data in the Swedish Intensive Care Registry are responsible locally for the data collection.

Contact

When information about you is included in a quality register, you have certain rights. Read more about them below. If you want to contact the Swedish Intensive Care Registry regarding your rights, please use these contact details:

The Swedish Intensive Care Registry
Postal address: Snårstadtorp 511, 655 93 Karlstad
Phone number: 070-2747529
E-mail address: ceo@icuregswe.org

You can also contact a Data Protection Officer with questions about you in quality registers. Data Protection Officers monitor compliance with laws relating to the processing of personal data.
The Data Protection Officer of the Board of Directors of Region Värmland is:

Erika Malmberg
Phone number: 072-549 64 34
E-mail address: erika.malmberg@intechrity.se

You contribute to better care

By being in a quality register, you help to improve care. It is voluntary to participate and it does not affect the care you receive. The data are used to compare care between different healthcare units and healthcare providers around the country. The results can be used for improvement work and research. The quality registers contribute to new knowledge of what is the best treatment and the more patients are present, the safer the results will be.

Support in the law

Anyone who processes personal data must be supported by the law for this purpose. The processing of personal data in quality registers is governed by the General Data Protection Regulation ( GDPR, and Chapter Seven of the Patient Data Act, PDL.

How the data about you is used

The data about you in quality registers may only be used to develop and ensure the quality of care, to produce statistics and to research in health care. The information may also be disclosed, after a confidentiality examination, to someone who is to use it for any of these three purposes. If information may be disclosed, it may be done electronically.

Privacy

The information about you in quality registers is protected by the health care confidentiality of the Public Access and Secrecy Act. As a general rule, this means that information about you may only be disclosed from quality registers if it is clear that neither you nor any related party to you suffers but if the information is disclosed.

Security

The information about you in quality registers is protected against unauthorized access to it. Only those who need the tasks to carry out their work may have access to them. It is verified that no unauthorized access to the data, known as log follow-up. The data is protected by encryption. Logging in to the register to receive information is done in a secure manner.

Access

The information about you in quality registers is protected against unauthorized access to it. Only those who need the tasks to carry out their work may have access to them. It is verified that no unauthorized access to the data, known as log follow-up. The data is protected by encryption. Logging in to the register to receive information is done in a secure manner. Authorised personnel in the healthcare unit that has entered the data in the quality register have access to this particular information. No other healthcare provider can access the data. Authorised personnel working on the quality register have access to all the information in the register.

Storage time and thinning

Information about you is removed when it is no longer needed to develop and ensure the quality of care.

Your rights

  • You have the right not to have information about you registered in the quality register
  • You have the right to have data about yourself deleted from the quality register at any time
  • You have the right to know if information about you is in the quality register and if so, to receive a copy of them free of charge, a so-called register extract. You have the right to receive the data in electronic form
  • You have the right to have incorrect information about you corrected. You have the right to have incomplete data
  • Under certain conditions, you have the right to request that the processing of data about you be restricted. This applies for the duration of other objections being assessed. Restriction means that the Quality Register may not do anything with the data about you more than to continue storing them
  • You have the right to be informed about which healthcare units have had access to information about you and when, so-called log extracts
  • You are entitled to damages if the data about you is handled in violation of the General Data Protection Regulation or the Patient Data Act
  • You have the right to lodge a complaint with the Privacy Protection Authority, which is the supervisory authority in this area