Privacy notice for the MoniSuomi survey

In this page scientific research privacy notice.

Information for those participating in the study

This is a description of how your personal data will be processed in the National study on the health, welfare and services of the foreign-born population (MoniSuomi). Participation in the study is voluntary. You will not face any negative consequences if you participate or do not participate in the study or if you discontinue your participation in it. Your choice of choosing to respond or not to respond in the survey does not affect your entitlement to health care services or any other service or benefit in Finland. If you discontinue your participation in the study, the material already collected can still be used in the study. Section 17 of this description includes more detailed information on your rights and how you may affect the processing of your data.
 
More information about the survey is available in the information sheet for research subjects and on the website at: www.thl.fi/monisuomi

1. Controller of the survey

The controller of the MoniSuomi survey is the Finnish Institute for Health and Welfare (THL).

Name: Finnish Institute for Health and Welfare (THL)
Address: P.O. Box 30, 00271 Helsinki, Finland
Other contact details: +358 29 524 6000; www.thl.fi

Contact person for research matters:
Name: Coordinator Lotta Mäkipää
Address: Mannerheimintie 166, PO Box 30, FI-00271 Helsinki
Telephone number: +358 29 524 8529
E-mail address: lotta.makipaa(at)thl.fi

Appendix 1 lists the partners that serve as joint controllers in the research.

2. Description of the research project and purpose of the processing of personal data

The aim of the study is to collect reliable data on the welfare, health, work ability and functional capacity, services, experiences of discrimination, employment, possible problems related to finding a job, inclusion, language skills and education of the foreign-born population. The data are used to promote the welfare of the foreign-born population and to better meet the service needs of those born abroad.  Up-to-date research data on welfare supports and helps the monitoring of integration.

The sample includes 18,600 people who themselves were born outside Finland or whose parents were born outside Finland. The sample is extracted from the Digital and Population Data Services Agency. The persons invited to the MoniSuomi survey are between the ages of 20 and 74 years. Data collection is carried out simultaneously with THL’s Healthy Finland data collection. Data are collected primarily using an electronic questionnaire that respondents fill out online. The data collection is complemented by a paper questionnaire and telephone interviews. Survey and interview data will also be supplemented with register data. The results of the study will be analysed statistically and reported electronically on the website of the National Institute for Health and Welfare and the Ministry of Economic Affairs and Employment in the spring of 2023. Individual respondents cannot be identified in the result reports. International scientific articles will also be published based on the data. 

THL is entitled to combine register data on health and well-being with survey responses from registers maintained by various official bodies and health care units. Register data will only be used for the purpose of the study. 

Identifiable personal data will be used to contact the research subjects and to link the register data to the research subjects’ data. After combining register data, personal data will be eliminated from the research data. It is not possible to identify individual research subjects from the data used by the researchers.

3. Parties and division of responsibilities for a study carried out as a cooperation project 

The project will be implemented in cooperation with the Ministry of Economic Affairs and Employment, Turku, Vantaa, Helsinki, and Espoo.

THL is responsible for the coordination and implementation of the study. THL maintains the original research register containing the personal data comprising the survey and interview data collected as part of the MoniSuomi study. THL is responsible for the data collection process, including contacting subjects, data cleansing, and analysing the basic results.

The municipalities and the Ministry of Economic Affairs and Employment co-fund the research, participate in designing the questionnaire and the marketing of the study. Municipalities also determine the sample size for their own municipality. Neither municipalities nor the Ministry of Economic Affairs and Employment process personal data in any way.

The organisations listed in Appendix 1 (THL partners) act as joint controllers in this study. Research subjects can submit any requests to exercise the data subject’s rights related to this study (see section 17) at: kirjaamo(at)thl.fi 

If necessary, THL will also forward the request to other organisations acting as joint controllers.

4. Director or group in charge of the study

Name: Hannamaria Kuusio
Address: Mannerheimintie 166, PO Box 30, FI-00271 Helsinki
Telephone number: +358 29 524 7657
E-mail: hannamaria.kuusio(at)thl.fi

5. Parties carrying out the study

The survey is conducted by THL’s Equality Unit.

6. Contact information for data protection officer

Contact details of THL’s data protection officer: tietosuoja(at)thl.fi

7. Name, nature and duration of the study

Title of the study: National study on the health, welfare and services of the foreign-born population (MoniSuomi)

Research type: repeated

Duration of study (how long the personal data will be processed):
The register follow-up stage of the study will last 70 years from the implementation of the survey. Register data is collected and updated according to the research plan during this follow-up stage. When the study has ended, research data will be stored in accordance with section 16. Research subjects can be approached again after the data collection in 2022. 

8. Legal basis for the processing of personal data

In accordance with Article 6(1) of the EU General Data Protection Regulation, the legal basis for the processing of personal data is the following:

  • Scientific or historical research purposes in the public interest, statistical purposes or the exercise of official authority vested in the controller (Data Protection Act, section 4, paragraph 3) 

9. Sensitive personal data

The following sensitive personal data are processed in the survey:

  • Health data

The processing of sensitive data is based on the following special category of Article 9(2) of the General Data Protection Regulation:

  • scientific or historical research purposes or statistical purposes

10. What personal data does the research material contain and from where are the data collected

Data obtained from the questionnaire:
background information (family income, family size, reason for moving to Finland, education, language skills), self-rated living conditions and quality of life, inclusion and experience of inclusion, discrimination and treatment, lifestyle, health, service use and related experiences, and work and employment in Finland. 

Data collected from registers: 

  • THL: Care Register for Health Care (HILMO) data, such as diagnoses and measures taken, Register of Primary Health Care Visits (AvoHilmo) data, Care Register for Social Welfare (SosiaaliHILMO), Cancer Registry data on diagnosed cancers, Mass Screening Registry data, cancer screenings, Medical Birth Register (birth years, birth and pregnancy monitoring data), Register of Congenital Malformations, Abortion Register data, Sterilization Register data, National Infectious Diseases Register data, Incomes Register data, Orthopaedic Endoprosthesis Register, Finnish Register of Visual Impairment
  • Statistics Finland: Data on education and occupation, socioeconomic status, main occupation, household income, causes of death, longitudinal data for personal data (FOLK)
  • KELA: Medicines subject to special reimbursement, medicine purchases, rehabilitation, sickness allowance, disability allowance, insurance information, benefit information, prescription centre and prescription archive (Kanta), medicine reimbursement rights, medical fees by specialisation, social assistance notifications sent by the Social Insurance Institution of Finland to municipalities, and applications for supplementary support (service needs notifications), basic social assistance, pension information
  • Digital and Population Data Services Agency (DVV): Personal identity code, name, address, date of birth, sex, municipality of residence, country of birth, native language, language of service, date of first move to Finland, date of most recent move to Finland, nationality, marital status, marital status history, number of persons in the household, number of minors living in the household, previous places of residence, residential building data (incl. coordinates), residential unit data. In addition, relative extraction is carried out on the research subject’s parents: The subject’s personal identity code, family relationship, country of birth (state code and name of state)
  • Finnish Centre for Pensions (ETK): pension register (pensions, decisions), earnings register, unpaid periods
  • Ministry of Economic Affairs and Employment (MEAE): basic information, job search professions, education qualifications, diagnoses, employment codes, subsidised employment, labour market training, work try-outs, assessments of fitness for work
  • Finnish Register of Kidney Diseases: diagnoses of kidney disease, data on treatments, data on treatment initiation, data on medication, data from end-of-year monitoring, data on deaths
  • Tax administration: data on earned income and capital income (salary, pension, dividends, other income)

11. Transfer or disclosure of data outside research group

Personal data will not be regularly disclosed or transferred outside the research group. The research data collected can be used and disclosed in accordance with the Act on the Finnish Institute for Health and Welfare (668/2008) and the Act on the Secondary Use of Social and Health Data (552/2019). The Finnish Institute for Health and Welfare has transferred the competence for data access authorisation to the Social and Health Data Permit Authority (Findata), which is primarily responsible for the data access authorisation of other applicant than THL.

12. Transfer or disclosure of data outside the EU or the European Economic Area 

No data will be transferred or disclosed to parties outside the EU or the European Economic Area

13. Automated decision-making 

No automated decisions are made.

14. The principles of protecting personal data

The data are confidential.

The data processed in the data systems:

  • user ID, password, registration of use, access control

Processing of direct identifiers:

  • Direct identifiers will be eliminated at the analysis phase

15. Processing of personal data after the end of the survey

The research data will be archived at THL without identifiers.

16. The rights of the data subject and their possible limitations

Under data protection legislation, research subjects have certain rights. By exercising these rights, research subjects can ensure that the protection of their privacy, which is a fundamental right, is realised. If you would like to exercise your rights, contact THL’s registry (kirjaamo(at)thl.fi) or the contact person mentioned in section 1.

If THL is unable to identify you from the data, rights such as the right of access, the right to rectification and the right to erasure will not be applied.

Withdrawing consent (Article 7 of the General Data Protection Regulation)

Where the processing of personal data is based on consent, you have the right to withdraw your consent at any time. The withdrawal of consent shall not affect the lawfulness of processing based on consent before its withdrawal.

Right of access (Article 15 of the General Data Protection Regulation)

You have the right to obtain confirmation as to whether or not your personal data are being processed in the survey and which of your personal data are processed in the survey. You may also request a copy of the personal data undergoing processing.

Right to rectification (Article 16 of the General Data Protection Regulation)

In case of inaccuracy or errors in your personal data undergoing processing, you have the right to request their rectification or supplementation.

Right to erasure (Article 17 of the General Data Protection Regulation)

You have the right to obtain from the controller the erasure of your personal data in the following cases:

  • the personal data are no longer necessary in relation to the purposes for which they were collected or otherwise processed
  • you withdraw your consent on which the processing is based and there is no other legal ground for the processing
  • you object to the processing and there are no overriding legitimate grounds for the processing
  • the personal data have been unlawfully processed; or
  • the personal data have to be erased for compliance with a legal obligation in Union or Member State law to which the controller is subject.

 Derogation from the rights

Derogations from the rights described in this section 17 The rights of the data subject and their possible limitations may occur in accordance with the conditions laid down in data protection legislation in so far as the obligation is likely to render impossible or seriously impair the achievement of the objectives of scientific or historical research purposes or statistical purposes. The need for derogation is always assessed on a case-by-case basis.

 If you would like to exercise your rights, contact THL’s registry (kirjaamo(at)thl.fi). 

Contact

If you have any questions about you rights, contact THL’s registry (kirjaamo(at)thl.fi) or the contact person mentioned in section 1. 

Right to refer the matter to the Data Protection Ombudsman

You have the right to refer the matter to the Office of the Data Protection Ombudsman if you consider that the valid data protection legislation has been violated in the processing of your personal data.

Contact details: Office of the Data Protection Ombudsman

Visiting address: P.O. Box 4, 00530 Helsinki
Postal address: P.O. Box 800, 00531 Helsinki 
Switchboard: +358 29 56 66700
Fax: +358 29 56 66735 
E-mail: [email protected]

Appendix 1. Joint controllers (Organisation, location)

  • City of Helsinki, Helsinki
  • City of Espoo, Espoo
  • City of Vantaa, Vantaa
  • City of Turku, Turku
  • Ministry of Economic Affairs and Employment, Helsinki

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