Information for participants or those interested in taking part
This page contains information for individuals considering, or who have agreed to take part in our research.
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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 DPO 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.
Can I withdraw my consent?
You are free to withdraw your 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.