HELSENORGE

Norwegian Gynaecological Endoscopic Registry – patient information

This document provides information about how your personal data is processed in the Norwegian Gynaecological Endoscopic Registry and what rights you have. Please contact us if you have any questions or something seems unclear.  

​​You do not need to take any action unless you wish to reserve yourself against having data about you stored in the Norwegian Gynaecological Endoscopic Registry.

The Norwegian Gynaecological Endoscopic Registry is a national quality registry. The main purpo​​​se of national medical quality registries is to ensure the quality of diagnostics and treatment in the health services. All patients who undergo endoscopic surgery for gynaecological conditions and diseases in public and private hospitals are registered.

What is registered​​​ ​​and how?

Your national identity number, name, address, information on education, marital status and first language. I​​nformation about your surgery and any complications, previous surgeries, body mass index and diagnoses relevant to your surgery. To maintain confidentiality, information such as name and national identity number are stored separately from other information in the register.

Information is registered electronically once the procedure is completed at your hospital using the quality registry portal in the Norwegian health network, Norsk Helsenett. Only autho​​​rised hospital staff (doctors, nurses and health secretaries) may be registered as users.

Everyone will receive a questionnaire 4 weeks after surgery by conventional mail or through www.helsenorge.no​. These questionnaires provide the registry with information about whether​​ complications have occurred during the first weeks after discharge, and information about how satisfied you were with the treatment.

Some of you will receive a questionnaire before surgery, 1 year and 3 years after surgery. This will provide us​​​ with information about the health benefits you experienced after treatment.​​​

Who can acces​s​​ the information?

​​The collected data is tre​ated confidentially, i.e. only persons working with the register will have access to it. Everyone who has access to the information in the register has a duty of confidentiality. The register facilitates that de-identified data is made available to the registering departments/hospitals for use in quality improvement in the health and care services. De-identified means that personally identifiable characteristics have been removed.

In order to make health information available for medical and health research, prior approval must be o​btained from the Regional Committee for Medical and Health Research Ethics (REC).

The information in the registry can be compared with information in other regulatory and statutory registries defined in the Health Registry Act, such as the Cause of Death Registry, the Cancer Registry, the Med​​ical Birth Registry and the Norwegian Patient Registry. The type of surgery in the Norwegian Gynaecological Endoscopic Registry will be compared annually with the Norwegian Patient Registry to calculate the registry's coverage.

Data stor​​a​ge

Vestfold Hospital Trust is the data controller. The general manager of the Norwegian Gynaecological Endos​copic Registry has the executive, administrative and day-to-day administrative responsibility for the registry. The information will be stored as long as the Gynaecological Endoscopy Registry has the status of a national quality registry. 

Your ri​​ghts​

You can at any time demand access to the information the registry has stored about you and who has had access to it, and request to have the data deleted. You can also request that incorrect information be corrected.

You have the right t​o object to the registration, storage and further use of personal and health information. If you do not want data about you to be registered and stored, you can opt out at any time, without having to explain why. This will not affect any further treatment or care you receive. If you choose to opt out, information about you in the registry will be deleted. However, ​​Vestfold Hospital will continue to process information to the extent necessary to fulfil the enterprise's duty to ensure that persons who have opted out of the register are not included again. 

You can opt out or revoke your reservation online, by logging in to www.helsenorge.no and making the necessary adjustments in the Norwegian Gynaecological Endoscopic Registry as follows: 

  1. Login to www.helsenorge.no
  2. Click on your name in the top left corner 
  3. Go to Privacy Settings under Profile and Settings 
  4. Go to Change settings under Research and health registries 
  5. Click on the Norwegian Gynaecological Endoscopic Registry
  6. Add Reservation
  7. Revoke reservation

As an alternative, you can make use of your rights by contacting the Norwegian Gynaecological Endoscopic Registry at Vestfold Hospital Trust, by sending an e-mail to NGER@siv.no or calling us at Tel. +47 90 61 46 85. Be careful when sending personal data via e-mail. We are not allowed to answer medical questions or send information about you by e-mail.

Regulatio​ns​

The Norwegian Gynaecological Endoscopic Registry was granted a licence for the processing of health information, granted by the Norwegian Data Protection Authority on 01.06.2012. Information processed after 01.09.2019 is regulated by the Medical Quality Registries Regulations.

The register shall perform tasks in the public interest and has a legal basis in Article 6(1)(e) of the General Data Protection Regulation, and Section 1-4 of the Norwegian Medical Quality Registries Regulations and Article 9(2)(j) of the General Data Protection Regulation (research and statistical purposes).

The register is a non-consent-based quality register; see Section 3-2 of the Medical Quality Registries Regulations. The provision provides for exemptions from the requirement for consent when necessary for reasons of data quality and coverage in the Register. Information shall be provided on the possibility of reserving oneself.

Processing of health data for research and statistical purposes without consent has a legal basis in Section 9 of the Personal Data Act. For access to medical and health research, the recipient must have received prior approval from the Regional Committee for Medical and Health Research Ethics.

General information about your rights and freedoms with regard to privacy can be found on the hospital's website (Norwegian). You can contact the data protection officer by e-mail (PVO@siv.no); you can also contact the switchboard (Tel +47 33 34 20 00) and ask for the data protection officer.

The General Data Protection Regulation and the Personal Data ActHealth Registry ActMedical Quality Registries Regulations


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