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Information for participants or those interested in taking part

This page contains information for project participants who agree to take part in our research. This information is in addition to that provided in the Participant Information Sheets, which remains valid.

 

As a participant in our research you have the right to know what data is collected about you, what it is being used for, who you can contact if you want more information, and how to proceed if you wish to make a complaint or raise a concern.

The University through which you have been recruited has a responsibility for the information collected, stored and analysed as part of this research project, and to guarantee your rights as a data subject. Each institution has appointed a Data Protection Officer (DPO) who acts as a point of contact for anyone wanting to know what data an organisation holds about them and what it is being used for.

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This page contains information for project participants who agree to take part in our research. This information is in addition to that provided in the Participant Information Sheets, which remains valid.

 

As a participant in our research you have the right to know what data is collected about you, what it is being used for, who you can contact if you want more information, and how to proceed if you wish to make a complaint or raise a concern.

The University through which you have been recruited has a responsibility for the information collected, stored and analysed as part of this research project, and to guarantee your rights as a data subject. Each institution has appointed a Data Protection Officer (DPO) who acts as a point of contact for anyone wanting to know what data an organisation holds about them and what it is being used for.

Who do I contact if I want to make a complaint?

 

 

In the first instance we urge you to contact the local researcher who recruited you to take part in the research. If you are not sure who this is, please contact us.

If you wish to complain about the use of your data you could contact the Data PO of one or more of the Universities hosting this research project.

 

If you feel it is appropriate and necessary, you may also file a formal complaint with your country's Data Protection Authority.

 

What information is this project collecting?

Personal data includes audio recordings of focus groups and interviews, transcripts made of these audio recordings, contact details of participants and correspondence with participants and potential participants.

 

How long will personal data collected for this project be stored for?

Audio recordings will be retained for at least three years. Anonymised transcripts will be retained and submitted for archiving in an open access repository. The local researcher will be the data custodian and will be responsible for ensuring the secure storage and confidentiality of the data.

 

How will personal data be stored?

Physical copies of the recordings (e.g. on memory cards) will be kept in a locked filing cabinet in a secure building. Digital copies will be stored on secure, encrypted devices at all times.

 

The recordings will be transcribed by an approved commercial transcription service with a non-disclosure agreement. Transcripts will be anonymised and assigned a code.

 

A key linking the codes to the personal details of interviewees will be stored securely and kept separate from the transcripts.

 

Will any personal data be transferred outside the country of origin?

Yes, audio recordings made in the UK will be shared with project researchers in Sweden and Iceland to ensure consistency across our dataset. These audio recordings will only be accessed by members of the research team and will not be shared with anyone else without the prior explicit written permission of the participant. Recordings made in Sweden and Iceland will not be shared outside of those countries.

 

Recordings and transcripts will be used for research purposes only. Once we have analysed the data we will submit our findings to peer-reviewed publications which can include selected quotes from the data set. Quotes in published works will be identified only by the code assigned to the transcript. No identifiable data will be shared with third parties.

 

What is the legal basis for processing personal data collected by this project?

We are processing audio recordings, transcripts and other personal data under the public interest basis set out in the GDPR (Article 6(1)(e). Any special categories of personal data—for example relating to racial or ethnic origin, or political opinions, religious or philosophical beliefs—will be processed on the condition of scientific research (Article 9(2)(j) GDPR).

Can I withdraw my consent?

You are free to withdraw this consent at any point before, or during the focus group or interview, which will mean that any responses you have given will not be used during the data analysis.

 

You may also withdraw your consent after the focus group or interview, until the data has been analysed at which point grouped data will be published in the form of anonymised quotes, and prepared for submission to an open access archive as described above.

 

Data, in the form of anonymised quotes which are used in a published paper cannot be withdrawn.  You are free to refuse to answer any questions during the focus group or interview.

Can I access my data?

Yes. If you have participated in the project you can submit a data access request to your local researcher to receive a copy of all personal data held about you by the project team. We will endeavour to supply you with this data within one month.

 

You also have a right to have any inaccurate personal data corrected, or completed. Your GDPR rights to objection or restriction of the processing of your personal data will be respected, unless this would prevent or seriously impair the object of our research.