Patientinformation_engelska

Information for patients and relatives

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The National Stroke Register (Riksstroke) is a national register with  its seat in the Västerbotten County Council. The aim of the register is to support high-quality care for all stroke  patients irrespective of their place of residence, gender and age. Since 1998,  all hospitals in Sweden report to the register. The register is funded by the  National Board of Health and Welfare and the Swedish Association of Local  Authorities and Regions http://www.kvalitetsregister.se/

Approximately 25,000 admissions due to stroke are  recorded each year in Sweden. Patients with TIA are also recorded in the  register due to the fact that TIA is a risk factor for developing a stroke.  A summary of the recorded data takes place at  Norrland’s University Hospital in Umeå. The results are presented in an annual  report which can be found at www.riksstroke.org under the tab annual reports.

In order to obtain reliable  data, it is important that most of those who suffer from a stroke or TIA are  included in the register. Reliable data increases the possibility to improve  the conditions and treatment for those who suffer from a stroke or TIA and  their relatives.

Recorded data

Stroke   The data that is recorded  during the acute stage of the stroke includes the patient’s personal identity  number, gender, living arrangements and functional ability before the onset of  stroke. Medical treatment, risk factors, complications linked to the illness,  team assessments and medical examinations are also recorded.

A follow-up is carried out  either by a letter or a phone call three months after the onset of stroke.  Earlier questions are followed up with a questionnaire. Patients are also given  an opportunity to comment on the treatment that they have received. Questions  about general health and the support received after leaving the hospital are  also included in the questionnaire.

A similar survey is also  carried out one year after the onset of stroke. This gives the patients an  opportunity to comment on the support that the municipality has provided. The  results are presented in a report entitled ”One year after the stroke”, which  can be found at www.riksstroke.org under the tab other reports.

TIA (Transient  Ischemic Attack)   TIA is an ephemeral lack of oxygen in one of the  arteries in the brain. Each year, approximately 10-12.000 patients have TIA. The patient’s personal identity number and  gender are registered during the acute stage of TIA. Medical treatment, risk  factors, complications linked to the illness, team assessments and medical  examinations are also recorded.

Processing patient data    Data is collected from the patient  journal and the patients themselves. The data in the quality register may only  be used for developing and ensuring the quality of stroke treatment, for  compiling statistics and for health care research purposes. Data may also,  after confidentiality assessment, be disclosed to those who are going to use it  for any one of these three purposes. Data that may be disclosed from the  register may be sent electronically. Data used in research requires the  approval of an ethics board.

Confidentiality   The data in the National  Stroke Register is treated according to the Public Access to Information and  Secrecy Act in the same way as medical records. This means that data from the  register may only be disclosed when it is certain that the disclosure does not  cause any damage or distress to the patient and his/her relatives.

Security   The data in the register is  protected from unauthorised people. There are specific security regulations in  place, which means e.g. that only those who need your data may get access to  it, that it must be ensured that data has not been disclosed to any  unauthorised persons, that the data is protected by encryption and that secure  log-in is used in accessing the data.

Access The caregiver reporting to  the register has direct access only to the data that they are reporting. No  other caregiver has access to this data. Those who manage the register can and  may have access to the data.

Erasure of data   The data is erased from the  register when it is no longer needed for developing and ensuring the quality of  stroke treatment.

Your rights as a patient

  • Participation in the  National Stroke Register is voluntary and does not affect the treatment that  you receive. Should you wish to decline to have your data registered, please  inform the contact person mentioned below.
  • You have the right to  demand, at any time, all data stored about you to be erased from the register
  • You have the right to  obtain a log file with information about the caregivers that have had access to  your data and the times when someone has accessed your data.
  • You have a right to damages  if your data is processed contrary to the Personal Data Act or the Patient Data  Act.
  • You have a right to demand  rectification if your personal data has not been processed in accordance with  the Personal Data Act.
  • You have the right, once  per year, to access the data stored about you free of charge (extract from the  register). Requests for an extract from the register must be made in writing,  signed and sent to the contact person mentioned below.

Contact information:

Contact us if you wish to

  • Receive information about  the caregivers that have had access to your data and the times when someone has  accessed your data.
  • Obtain more information about  the register.
  • Decline to have your data reported  to the register.
  • Have your data erased from  the register.

 

………………………………………………………………………………………… (Contact person at  Riksstroke)

Should you wish to obtain  an extract from the register, please send your request, in writing, to:

………………………………………………………………………………………… (Personal data  representative/local authority)

 

Personal data representative

Local authority (political board or council) for the  data gathered and reported to the register is:

……………………………………………………………………………………………………..

Central organisers of the register are the  Västerbotten County Council, Norrland’s University Hospital in Umeå.