Organization - Purpose

The Swedish Intensive Care Registry (SIR) was founded in 2001 and has Region Värmland as the responsible authority including the central personal data responsibility (CPUA). The registry's goal is to drive, develop and follow up quality in intensive care and related forms of care in Sweden without profit. The register holder is appointed by the health and medical director of Region Värmland, who is the decision maker for the register within the assignment given. Since the register was created as a real basis for cooperation, SIR has had the non-profit association Swedish Intensive Care Registry (where all Swedish ICUs are members) as a basis for dialog, education and exchange of experience and from the association, representatives are offered annually to the register's steering group, which, however, is formally appointed by the register holder.

History

The association is funded entirely by membership fees and grants from the National Board of Health and the Swedish Association of Local Authorities and Regions funds for the national quality register. No sponsorship or other commercial financing or bond exists. This website caters specifically to the medical profession with knowledge of intensive care, except in cases where pages are explicitly stated as being directed at the public, the media and patients. Intensive care results from 1/1/2005 are subject to the condition that data be published, openly stating the name of the hospital, while the data prior to this date is de-identified using a numeric code.

Purpose 

National quality registers are always subject to a Central Personal Data Protection Authority (CPUA), which is legally and financially responsible for each register. The register holding authority appoints the register holder who is the decision maker for the activities of the register. The goal of the Swedish Intensive Care Registry is to monitor and improve the quality of Swedish intensive care in selected continuously monitored areas by providing expertise to the registry's steering committee and other working groups, promoting method development and research in intensive care, especially in epidemiology, and ensuring a close link between the quality register and the clinical care activities in the area. Types of care related to intensive care may also be included in the association's activities if the quality register includes such data. 

Definition of intensive care 

Intensive care is a level of care and not a treatment facility. Intensive care is defined as advanced monitoring, diagnosis or treatment of imminent or manifest failure of vital bodily functions. If this criterion is not met, the patient should not be classed as an intensive care patient. Post-operative care which due to space restrictions, a post-operative department being closed, or the absence of a post-operative unit, is carried out at the ICU is classed as intensive care. On the other hand, care carried out at a post-operative unit which meets the criteria for intensive care is classified as intensive care.

The goals of intensive care

The unit’s overall objectives include:
Providing the best medical and nursing care performance with the lowest human and material resources for the same type and degree of illness without complications.

The above mission statement allows for the measurement and presentation of central and appropriate variables in the follow-up activities. An important task for SIR is to promote greater standardization of selected parameters. These national and international indicators allow for monitoring of trends over time and comparisons with others.

Ethical regulations

From the outset SIR identified a number of situations in which data from the register may be of interest to various stakeholders. In many cases, use of the data may be sensitive, and the purpose behind it may need to be analysed and published. For this reason SIR has created a process for how a query concerning a data excerpt from SIR is to be handled if it is more demanding than what is possible to obtain from our open output data portal. The ethical regulations also form the basis for granting opportunities for research which makes use of the register. The website ought to be able to reflect those projects which are granted such opportunities, on an ongoing basis.