Privacy notice for the Development of a comprehensive mental health literacy questionnaire

7.4.2026

Information for participants of the research project

EU General data protection regulation, articles 12–14.

You are taking part in the research project Development of a Comprehensive Mental Health Literacy Questionnaire (CMHLQ). This notice describes how your personal data will be processed in the study.

Participation in the study is voluntary. There will be no negative consequences for you if you choose not to participate in the study or if you withdraw from the study. For more information on your rights and how you can affect the processing of your personal data, please see the end of this notice.

The purpose of this notice is to provide information on the personal data that will be processed, the source of the data and how the data will be used in the study. For more information on your rights and how you can affect the processing of your personal data, please see the end of this notice.

1. Data Controller

Finnish Institute for Health and Welfare (THL)
P.O. Box 30 (Mannerheimintie 166)
FI-00271 Helsinki
Tel. +358 29 524 6000

Contact person in matters concerning the project:

Johanna Cresswell-Smith
Finnish Institute for Health and Welfare (THL)
P.O. Box 30 (Mannerheimintie 166)
FI-00271 Helsinki
Tel: +358 29 524 7351

2. Description of the study and the purposes of processing personal data

The personal data processed in this study is used solely for scientific research, specifically for the development and validation of the Comprehensive Mental Health Literacy Questionnaire (CMHLQ).

The study aims to create a psychometrically robust questionnaire that measures different aspects of mental health literacy, including:

  • understanding mental health and wellbeing,
  • recognising mental disorders and knowing about treatment options,
  • awareness of stigma, and
  • help-seeking skills and competencies for mental health self-management.

To achieve this, the research involves refining questionnaire items, collecting qualitative feedback, and large-scale quantitative validation across several countries. The personal data collected consists of basic demographic information (age, gender, country of residence, native language) that is needed to analyse how questionnaire items function in different groups, and is provided by the Prolific platform based on information previously supplied by the participants.

The SoSci Survey data collection platform is used for questionnaire data collection, and stores only the participant-supplied responses to the questionnaire items, the Prolific ID required to link responses to demographic data and to process payment, as well as response times to the individual items.

Only minimal personal data will be processed in this study, and all data collected will remain fully anonymous at every stage. No directly identifying information (e.g., names, addresses, contact details, IP addresses) will be collected. Participants are known to the research team only through a Prolific ID, which is removed as soon as practicable after data download from Prolific to ensure that no reasonable means of re-identification remains. All demographic information provided by Prolific (age, gender, country of residence, and native language) are pseudonymised at source and contain no direct identifiers, in line with Prolific's documentation confirming that researchers receive only pseudonymised participant data.

Following transfer from the Prolific Research Platform data will be anonymized (i.e., Prolific research identification codes will be removed) and stored securely on THL servers with restricted access and will be used solely for the purposes described in this research plan.

The results will be used to develop a final validated questionnaire for use in research, public health monitoring, and mental health promotion.

3. Parties and their responsibilities in research collaboration

This study is conducted within the Joint Action PreventNCD international collaboration.

The Finnish Institute for Health and Welfare (THL) is the leading organisation. THL is responsible for:

  • overall coordination of the study
  • methodological oversight
  • data stewardship and secure data processing
  • ensuring alignment with THL's statutory mandate and GDPR requirements

4. Principal investigator or research group

Responsible Researcher: Johanna Cresswell-Smith Finnish Institute for Health and Welfare (THL) P.O. Box 30 (Mannerheimintie 166)
FI-00271 Helsinki
Tel: +358 29 524 7351

5. Contact details of the Data Protection Officer

The current Data Protection Officer at THL is Jarkko Reittu. You can contact the Data Protection Officer by sending an e-mail to the address: tietosuoja(at)thl.fi.

6. Persons processing personal data in the study

The following groups of persons may process personal data during the study:
Researchers involved in the CMHLQ project at THL.

All persons processing the data are bound by confidentiality obligations and THL's data protection and information security policies.

7. Nature and duration of the study

Nature of the study: One-time research

Duration of the processing of personal data:

The anonymized data are stored permanently, per THL regulations for data collected with the participants' consent.

8. Lawful basis of processing

Personal data is processed on the following basis, which is based on Article 6(1) of the General Data Protection Regulation: participant's consent.

9. Personal data included in the research materials

Because data collection is conducted through the Prolific platform, only minimal personal data are gathered, limited to basic characteristics (age, gender, country of residence, native language) and survey responses that cannot be used to identify individuals.

10. Sensitive personal data

No sensitive personal data (types listed below) will be processed in the study.

  • Racial or ethnic origin
  • Political opinions
  • Religious or philosophical beliefs
  • Trade union membership
  • Genetic data
  • Biometric data for the purpose of uniquely identifying a natural person
  • Health
  • Sex life
  • Sexual orientation
  • Personal data relating to criminal convictions and offences or related security measures.

11. Sources of personal data

Basic demographic data (age, gender, country of residence, and native language) is collected via the Prolific platform, and is originally provided by the participants.

12. Transfer and disclosure of the personal data to third parties

None.

13. Transfer of personal data to countries outside the EU/European Economic Area

None.

14. Automated decisions

No automated decisions are made.

15. Safeguards to protect the personal data

The data is confidential.

Protection of manual material: (No manual material is collected).

Personal data processed in IT systems:

  • username
  • password
  • access control

Processing of direct identifiers: Direct identifiers will be removed in the analysis phase.

16. Processing of personal data after the completion of the study

The research material will be archived without identifiers.

Where will the material be archived and for how long: In the THL repository, permanently.

17. Your rights as a data subject and deviations from the rights

The contact person in matters concerning the rights of the participant is the person mentioned in section 1 of this notice.

Rights of data subjects

According to the General Data Protection Regulation (GDPR), data subjects have the right

  • of access to their data
  • to rectification of their data
  • to the erasure of their data and to be forgotten
  • to restrict the processing of their data
  • to data portability
  • to object to the processing of their data
  • not to be subject to a decision based solely on automated processing.

Not all of these rights can be exercised in all situations, depending on factors such as the basis for the processing of personal data.

For more information on the rights of data subjects in different situations, please see the Data Protection Ombudsman's website:
What rights do data subjects have in different situations? (Office of the Data Protection Ombudsman)

Exceptions to data subject rights

Under the General Data Protection Regulation and the Finnish Data Protection Act, certain exceptions to the rights of data subjects can be made when personal data is processed in scientific research and fulfilling the rights would render impossible or seriously impair the achievement of the objectives of the processing (in this case, scientific research).

The need to make exceptions to the rights of data subjects will always be assessed on a case by case basis.

Right to lodge a complaint

You have the right to lodge a complaint with the Data Protection Ombudsman's Office if you think your personal data has been processed in violation of applicable data protection laws.

Contact details:

Data Protection Ombudsman's Office (Tietosuojavaltuutetun toimisto)
Address: Ratapihantie 9, 6th floor, 00520 Helsinki
Postal address: P.O. Box 800, 00521 Helsinki
Tel. (switchboard): +358 029 56 66700
Fax: +358 29 56 66735
E-mail: tietosuoja(at)om.fi.

Updated: