Patientinformation (engelska)
Registration of personal data in the Swedish Renal Registry (Svenskt Njurregister)
Vision
The Swedish Renal Registry shall:
- contribute to saving lives and to the achievement of equality of health for renal patients
- be used actively for follow-up, education, quality improvement, research and management in the field of nephrology
Purpose
The purpose of the Swedish Renal Registry is to contribute to an equal health and sickness care of high quality nation-wide, and to ensure that treatment guidelines are adhered to.
Your contribution
By being included in the Swedish Renal Registry you contribute to the improvement of health care throughout Sweden. Your participation in the quality register is voluntary and does not affect the care you receive. Your data is used by the care provider for comparison to other care-providers in Sweden. This information makes it possible to decide what work procedures, methods of treatment and medicines lead to the best results. The information is subsequently used by care-providers to improve their work.Data recorded by the register is the Civic Registration Number (date of birth), health-care contacts at the nephrology clinic, diagnoses, treatments etc. Sometimes information which you yourself provide on questionnaire forms is also recorded.
Responsibility for all National Quality Registers
Your care-provider is responsible for entering your data in National Quality Registers and for ensuring that it is transferred to the registers in a secure manner. They are also responsible for your data when used for internal quality improvement. Region Jönköpings län is legally responsible for the Swedish Renal Registry and all personal data registered.
Use of data
Information is recorded in the quality register in order to provide statistical information and to enable the quality of the care provided to be continually improved. Data may also be used for research purposes but only with the approval of the Ethical Review Authority. In order to compile and find information, your civic registration number and various search functions are used. Sometimes data from the quality register is coordinated with data from other registers which contain information related to health care and the population. When statistical information from the registers is published it is impossible to identify information relating to any particular individual.
Information access
Your care provider registers information about you and has electronic access to this information. In addition, a limited number of persons working with the quality registers in the regions have access to data related to individual patients. Information in the register may only be shared with persons outside the health care service if neither the patients nor their relatives will suffer in any way as a result. In practice, only researchers can extract personal data about individual patients from the quality register for research purposes.
Your rights
If you as a patient do not wish us to register information about you, you have the right to choose not to participate. If so, please inform your health care provider.
- You do, at any time, have the right to ask that the information about you be removed from the register.
- You have the right to receive confirmation that personal data related to you is being processed and if so, to receive a copy of your personal data free of charge.
- You have the right to have incorrect personal data corrected.
- Under certain conditions, you have the right to request that the processing of your data be restricted.
- You have the right to information regarding which care unit and at what time someone has accessed to your data. You have the right to damages if your personal data is handled in conflict with EU’s General Data Protection Regulation or the Data Protection Act.
- You have the right to submit a complaint to the Swedish Data Protection Authority.
Contacts
If you want more information about the Swedish Renal Registry or data registered about you, or to get your registered data removed, please contact your nephrology clinic or the registry:
Svenskt Njurregister
Medicinexp plan 5
Länssjukhuset Ryhov
551 85 Jönköping
Phone: 010-242 19 66
E-mail: snr@rjl.se
If you want to get in contact with a data protection officer, please ask your nephrology clinic about contacts with your local officer. Secondly, you may contact the data protection officer of Region Jönköpings Län:
Dataskyddsombudet
Region Jönköpings Län
Box 1024
551 11 Jönköping
Tel: 010-241 00 00
E-post: dataskyddsombud@rjl.se
You can read more about all National Quality Registers at www.kvalitetsregister.se and more about the Swedish Renal Registry at www.snronline.se.