You are about to take part in a scientific study taking place at the University of Turku. This privacy statement explains how we will process your personal data in this study.
University of Turku
Contact person for this project:
Name: Kaisa Mishina
Address: Research Centre for Child Psychiatry, Lemminkäisenkatu 3, 20014 University of Turku
Tel.: +358 50 310 1358
This study improves and assesses a web-based, universal parenting programme which aims to support and strengthen positive parenting during early childhood. The purpose of the study is to assess the use and usability of the programme.
In this study we will assess the following things:
1) The bearing that this universal programme has on the child’s behaviour and irritability as assessed by the parent.
2) The usability of the universal programme as assessed by the parent.
3) Which factors relating to the family/child/programme predict the potential future use of the programme.
4) The amount of time that the parents spend on the universal programme and they ways in which they use it based on log data.
The basis for the processing of personal data in this study is that this is necessary for purposes of public interest, i.e. to carry out scientific research. Participation in the study is voluntary, and the participant confirms their participation by signing an informed consent form. The participant has the right to interrupt their participation in the study or withdraw their consent without having to give a reason at any time during the study. There will be no negative consequences for the participant if they interrupt their participation in the study or withdraw their consent, and it will not affect their position as a client of the health care services.
The material collected during this study will be used to assess the Be Present for Your Child parenting programme, which has been developed to support parenting skills. In this study, we will be assessing the programme in relation to everyday situations and the behaviour of the child. We will also be examining the usability of the programme as assessed by the users. In addition, we will also be examining the time that parents spend on the parenting programme and how they use the programme.
The programme website is located on a server maintained by the University of Turku, and it is covered by the information security guidance of the data administration of the University of Turku. The platform developer (Sofokus Oy) is a third party who has access to the data contained in the programme. This supplier has signed a contract on the processing of personal data in accordance with Article 28 of the General Data Protection Regulation.
The study’s purpose, which is of public interest, is to carry out research on the population level which aims to improve children’s mental wellbeing and to develop technologies which are aimed at supporting parenthood. The purpose of the processing of personal data is to collect scientific data and/or to develop technology which will allow us to support positive parenthood in a cost-efficient way. As this is a scientific study, the purpose of processing personal data is not to use the data for decision-making or profiling related to the participant.
Name: Andre Sourander
Address: Lemminkäisenkatu 3, 20014 University of Turku
Tel.: +358 50 365 3447
The data protection officer of the University of Turku can be contacted via email: firstname.lastname@example.org.
At least the following members of the research group at the Research Centre for Child Psychiatry at the University of Turku will participate in the processing of personal data:
Kaisa Mishina, Senior Researcher
Malin Kinnunen, Project Coordinator
Annika Heikkinen, Clinical Research Nurse
Jarna Lindroos, Senior Planning Officer
Susanna Hinkka-Yli-Salomäki, Statistician
Atte Sinokki, Project Engineer
Tanja Imberg, Project Engineer
Daniel Lee, Research Assistant
Altti Marjamäki, Research Assistant
Joe Hägg, Research Assistant
Andre Sourander, Professor
Title of the study: Be Present for Your Child – a universal digital parenting programme for the families of three-year-olds
Duration of processing of personal data: The personal data will be stored on the university’s protected server until 2040. After this, the detailed electronic personal data will be adapted to an aggregated format where individuals cannot be identified. The aggregated material will be archived for research purposes.
The processing of personal data is based on the following basis for processing, as mentioned in Article 6(1) in the General Data Protection Regulation:
☐ consent of the data subject;
☐ processing is necessary for the performance of a contract;
☐ compliance with a legal obligation to which the controller is subject;
☐ processing is necessary in order to protect the vital interests of the data subject or of another natural person;
☒ processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller:
☒ scientific or historic research or for statistical purposes;
☐ archiving scientific or cultural heritage material;
☐ legitimate interests of the controller or a third party.
The research data will be collected through electronic surveys within the Be Present for Your Child programme. We ask for the parent’s contact details (name, phone number, email), gender, type of family, municipality of residence, and which child health clinic gave the parent the programme brochure. We also ask about the child’s gender and collect information about the child’s behaviour and irritability.
In addition to data collected from the research participant, we also collect data via the programme website, which collects log data. This information includes: Data related to the research website, such as username and password, and to the participant’s use of the programme, including: number and times of visits, time spent logged in and functions used.
The study fulfils the following conditions which protect your rights:
The study has been approved by the Ethical Committee at the University of Turku (Statement 45/2017).
The data collected in this programme will be stored on the server while the study’s recruitment phase is ongoing and until all the follow-up surveys have been completed. The user’s login details will remain active throughout the study’s recruitment and follow-up phases. The login details will not give the user access to old responses to initial and follow-up surveys; users only have access to their profile data and the responses given within the programme (practise pages). The profile data which the participant can access when logging into the programme are username, first name and surname, phone number and chosen programme language. The only data which has been entered into the programme about the child that is shown is the child’s gender. The login details will remain active throughout the study’s recruitment phase.
The link between the website and the user’s computer is protected through SSL encryption. The website is accessed with a personal user ID and password. The participants are responsible for making sure that their actions do not allow a third party to access their login details. We collect log data to be able to assess the number of participants, the recruitment speed and methods, the number of people dropping out of the study, and to what extent the people in the queuing group continue with the study after the queuing has ended. Log data will also be used to make technical improvements to the programme, and to discover, prevent and solve technical issues (Information Society Code (917/2014) Sections 138, 141, 144, 272). The data will be stored for as long as required for these purposes, and it will not be used for any other purposes.
No special personal data groups are processed in this study.
Personal data is collected from the survey responses given by the child’s guardian, i.e. the research participant. Data is also collected from the programme’s log files. This includes the time spent using the programme.
Ohjelman alustan kehittäjä (Sofokus Oy) on tutkimuksen ulkopuolinen taho, jolla on pääsy ohjelmassa oleviin tietoihin, niiden ollessa tutkimuksen aikana alustalla. Kyseisen käsittelijän kanssa on tehty tietosuoja-asetuksen 28 artiklan mukainen sopimus henkilötietojen käsittelystä.
No data is transferred to countries outside the European Union or European Economic Area.
No automated decision-making is used on the personal data that is processed.
The following protective measures apply to the personal data:
☒ The material is confidential.
☒ Protective measures applying to the written material:
☒ Processing of personal data in IT systems:
username, password, the data security principles of the University of Turku
Processing of direct identifiers:
☒ Direct identifiers will be eliminated at the analysis phase.
Pseudonymised material will be used in the analyses.
☐ The material that is analysed contains direct identification data.
The research material will be archived:
☐ without identifying data
☒ with identifying data
Where the research material will be stored and for how long: The personal data will be stored on the university’s protected server until 2040. After this, the detailed electronic personal data will be adapted to an aggregated format where individuals cannot be identified. The aggregated material will be archived for research purposes.
According to GDPR you have the right to:
The extent of these rights is connected to the basis of processing your personal data, and using these rights requires authentication.
Research participants should contact the data protection officer of the University of Turku with any questions or demands relating to the processing of personal data: email@example.com
Data subjects can contact Senior Researcher Kaisa Mishina at the University of Turku (firstname.lastname@example.org) for more information about the rights in line with GDPR.
GDPR and national data protection legislation allows us to deviate from the rights of data subjects in certain ways when the processing of personal data is based on scientific research and if enforcing these rights would either make the purpose of the processing of personal data (in this case, scientific research) impossible or would impede the processing significantly.
The need to deviate from the individual rights is always assessed on a case-by-case basis. In the study which this privacy statement pertains to it is likely that we need to deviate from the following rights of the data subject:
☐ Right of access (Article 15)
☐ Right to rectification (Article 16)
☐ Right to erasure (Article 17)
☐ Right to restriction of processing (Article 18)
☐ Right to data portability (Article 20)
☐ Right to object (Article 21)
You have the right to make a complaint to the Data Protection Ombudsman if you feel that your personal data has been processed in a way that breaches the relevant data protection legislation.
Office of the Data Protection Ombudsman
Street address: Lintulahdenkuja 4, 00530 Helsinki
Postal address: P.O. Box 800, 00531 Helsinki
Switchboard: +358 (0)29 566 6700
Email (registry office): tietosuoja(at)om.fi
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