Register description

Register description (Finnish Cancer Registry)

Approved in the meeting of the Executive Committee of the Finnish Cancer Registry on 9.3.2015.

Register description pursuant to section 10 of the Personal Data Act (523/1999).

  • Controller of the register
  • Persons in charge of the register
  • Other persons involved in register matters
  • Name of the register
  • Basis for maintaining the register
  • Purpose of the register
  • Data content of the register
  • Regular sources of information
  • Regular disclosure of data
  • Data subject's right of access and rectification of incorrect data
  • Principles of register protection

Controller of the register

Name: National Institute for Health and Welfare (THL)
Postal address: P.O. Box 30
Postal/Zip code: FI-00271 Helsinki
Street address: Paciuksenkatu 21, Helsinki
Tel. 029 524 6000

Technical maintenance of the register

Name: Cancer Society of Finland
Postal address: Unioninkatu 22
Postal/Zip code: FI-00130 Helsinki
Tel. 09 135 331
Email: kirjaamo at cancer.fi

Persons in charge of the register

Name: Anni Virtanen
Title: Register Officer 
Post held: Chief Medical Officer, Finnish Cancer Registry
Address: 
Postal/Zip code: 
Tel. 

Name: Nea Malila
Title: Deputy Register Officer
Post held: Director of the Finnish Cancer Registry
Address: Unioninkatu 22
Postal/Zip code: FI-00130 Helsinki
Tel. 050 305 5730

Name: Liisa Pylkkänen
Title: Deputy Register Officer 
Post held: Chief Medical Officer, Cancer Society of Finland
Address: 
Postal/Zip code: 
Tel. 

Other persons involved in register matters

Name: Tiina Hakanen
Scientist
Tel. 046 920 7876

Name of the register

Finnish Cancer Registry, which includes mass screening registry for breast cancer and cervical cancer

Basis for maintaining the register

Statutory register

Act on the National Institute for Health and Welfare (668/2008)
Act on National Personal Records Kept under the Health Care System (556/1989)
Decree on National Personal Records Kept under the Health Care System (774/1989) including amendments
Personal Data Act (523/1999)
Health Care Act (1326/2010)
Government Decree on Screenings (339/2011)
Agreement concluded between THL and the Cancer Society of Finland on 13.8.2009. The agreement has been renewed on 2.2.2011, 9.1.2012 and 18.12.2012.

Purpose of the register

To carry out the tasks assigned to THL as provided by law, necessary information regarding the prevalence, prevention, early detection and treatment of cancer diseases as well as medical rehabilitation and use of services is stored in the Finnish Cancer Registry.

Data are collected only for statistical and scientific research purposes.

Data content of the register

All persons residing in Finland who have developed cancer are registered in the Cancer Registry, as well as the data of those people who form the target population for mass screenings.
The data stored include the personal data, cancer and death certificate data of patients, as well as data on mass screenings for breast and cervical cancer. The data content has been determined in the attached guidance letter of the National Board of Health [Lääkintöhallituksen ohjekirje Nro 6/1990, DNo 4776/02/90] and in the guidance and classifications from Stakes (former THL) [Stakesin ohjeita ja luokituksia 2004:6].

Finnish Cancer Registry

Clinical notification:
Identification data
- social security number
- name
- gender
- municipality of residence

Data related to tumor
- primary site (location)
- time of detection
- stage
- primary treatment (surgery, radiotherapy, cytostatic chemotherapy, hormone therapy, other treatment)

Notifying institution

Laboratory notification:
Identification data
- social security number
- name
- gender
 

Data related to tumor
- primary site (location, i.e. topography)
- histologic type (morphology)

Data related to specimen
- specimen quality
- date of specimen collection
- pathologist who undertook the investigation of specimen

Notifying laboratory

Other data:
- person's municipality of residence at the beginning of the year during which cancer was diagnosed
- person's socioeconomic status, principal activity, education
- time of emigration and immigration
- time, place and cause of death

Mass Screening Registry

Identification data (target population for mass screenings):
-social security number
-name
-address
-municipality of residence

Background information:
-marital status
-person's socioeconomic status, principal activity, education
-mother tongue

Data related to screening invitation:
-year of invitation
-municipality sending invitation
-reason for invitation (age-group based invitation; risk-group based invitation)

Data related to screening:
-time of participation
-history (symptoms or previous findings)
-results of screening (result of a mammography or a pap smear)
-results of further examinations (procedures, time)
-final diagnosis after further examinations (histology) 

Regular sources of information

Health care authorities and institutions as well as health care staff are obliged to provide the National Institute for Health and Welfare – free of charge and regardless of any duty of confidentiality – with any data from documents and registers in their possession, which pursuant to the Act on National Personal Records Kept under the Health Care System (556/1989) are to be stored in person registers.

Data on the municipality of residence of cancer patients as well as data related to their emigration and immigration are received from the Population Register Centre (authorization to access information 632/410/12)
The follow-up data from the Mass Screening Registry and the data on the target population for mass screenings are received from the Population Register Centre (which grants separate authorizations concerning the extraction of data on cervical cancer screening, on breast cancer screening and risk group address updates) 
Data on socioeconomic status, profession and education as well as data on death are received from the Statistics Finland (agreement TK-52-1641-14 and license TK-53-1258-13).

Regular disclosure of data

Personal data contained in the register are to be kept secret pursuant to section 4 of the Act on National Personal Records Kept under the Health Care System (556/1989). Data contained in the register can be disclosed for scientific research and statistical purposes, as separately laid down under section 4 of the Act on National Personal Records Kept under the Health Care System (556/89) and Chapters 2–4 of the Personal Data Act (523/1999). The National Institute for Health and Welfare may, after a hearing with the Register Officer and the Data Protection Ombudsman, grant permission for a disclosure of personal data for scientific research purposes. Statistics Finland may grant permission to disclose personal data on socioeconomic status, profession and education for scientific research purposes.

Data subject's right of access and rectification of incorrect data

Because the registry is a statutory statistical and research register and personal data contained in the register are not to be disclosed or used in decision-making concerning those registered, the Finnish Cancer Registry does not inform the registered persons on the processing of their data. Furthermore, those registered do not have any right of access or correction of inaccurate data contained in the register.

If the controller of the register refuses to provide access to the data, he/she has to give a written certificate mentioning the reasons for refusal.

Ground: Personal Data Act (523/1999)

Principles of register protection

Pursuant to section 4 of the Act on National Personal Records Kept under the Health Care System (556/1989), the personal data contained in the Finnish Cancer Registry are to be kept secret.

The Finnish Cancer Registry contains personal data in the form of cancer and mass screening notifications both in electronic and paper format. The notifications in paper format may also have been stored as archival records, which have been microfilmed or scanned.

Based on an authorization granted by THL (without a separate research authorization), access to individual data contained in the register has been limited and applies solely to the staff maintaining the register, including the Chief Medical Officer of the Finnish Cancer Registry, those responsible for storing and coding of cancer data, those responsible for quality control and IT staff. All these people have signed a lifelong confidentiality agreement.

The data in electronic format are located on separate, protected servers. The processing of register data requires access to the internal network of the organization and knowledge of the individual password, which protects a workstation and databases. All passwords are issued on a per person basis. The monitoring of access rights and access control is carried out in a centralized way. Each person has only access to such data and functions, which are relevant to his/her job.

Notifications in paper format and those in electronic format sent via a physical storage media are stored in locked cupboards during the storage and coding phase. After that they will be transferred to appropriately locked archives. Databases will be secured once daily by taking backups and once a month, backup copies will be taken to a bank safe Backup copies will be stored for 6 months. However, records from the beginning of each year will be stored permanently. 

Any microfilmed material will be archived and backup copies of the material (years 1952–2001) have been transferred to the archives of the National Institute for Health and Welfare in 2007. After year 2001 no material has been microfilmed. All cancer notifications in paper format and received after 2001 will be archived either as paper versions or as scanned files. After scanning, the paper versions of cancer notifications will be destroyed in a secure way.

Doors leading to the premises of Cancer Registry are locked and passage control is implemented also during office hours. There is recording camera surveillance in the premises. All visitors shall be registered and met personally, and outsiders have no free access to the premises of the registry.

Annexes

Forms and filling instructions

- Clinical notification form
- Laboratory notification form

- Cervical screening form
- Mammograpy form