Data protection and confidentiality
What data will be collected of/on me?
Only such data will be collected that enable FOLM research staff to conduct the interviews. Rigorous critical discussion within the FOLM consortium has taken place to keep the amount and type of collected data to a justified minimum. Among these are:
- Personal data (anonymised. Personal identifiers are kept separated from other data wherever possible).
- Written and spoken statements from the interview.
The interview will be audio/video recorded, purely to capture and transcribe accurately what you say – so the interviewer can concentrate on your conversation without having to take notes.
Legal basis / Lawfulness
In line with the GDPR and the UK Data Protection Act, FOLM collect and process the described types of data of you:
- with your consent.
- so that we can communicate with you, e.g. to arrange a date for the interview with you.
- in the legitimate interest of conducting research activities in line with the EEA & Norway Grant funding agreement.
What will happen with the data collected in the interview?
All personal data will be pseudonymised and/or anonymised according to GDPR and the UoE ethic guidelines. Your data will be referred to by your FOLM ID, and all care is taken to keep personal identifiers such as name or email address separate. The raw data will only be accessible to your interviewer and the FOLM lead researcher, who have undergone a critical nomination process and have signed a Data Protection Self Declaration.
The FOLM Consortium take a proactive approach to privacy. We do not use profiling or automated decision-making processes.
The FOLM Consortium organisations undertake to treat your personal data absolutely confidential, making use of them exclusively for the statutory purposes of non-commercial activity within the the FOLM project in accordance with the funding agreement. This is in particular to evaluate the FOLM programme.
The anonymised results of their research will be summarised in project reports, journal articles, presentations, and other academic and public engagement output. Quotes or key findings will always be made anonymous in any formal outputs unless we have your prior and explicit written permission to attribute them to you by name. Transcripts will be saved under the anonymous FOLM ID you have been issued for data protection purposes upon entry into the programme. All names and other identifiers will be anonymised or pseudonymised as appropriate in the process of transcription. IDs and any explanation to the pseudonyms are stored in a separate file.
Anonymised results will be used in several ways:
- in combination with findings from other data sources and research methods within the FOLM research, e.g. for triangulation and expansion of findings.
- in project reports to the funder (published and unpublished).
- in academic journal articles.
- in public engagement activities to disseminate findings to relevant stakeholders and audiences.
How will my data be stored and processed?
The interviewers and researchers will store, process and use your personal data solely for the statutory purposes of non-commercial activity within the realisation of the FOLM project, and in accordance with the European General Data Protection Regulation (GDPR). The organisations forming the FOLM consortium implement especially developed action policies to prevent any unauthorized or inappropriate access to that information.
All electronic raw data will be stored on on a password-protected and access-restricted data drive of the University of Edinburgh, UK. Access to these files is restricted to the FOLM staff directly involved in the research (e.g. interviewers, lead researcher).
The FOLM consortium will retain personal raw data (e.g. real names, interview recordings) only for as long as necessary, i.e. until the publication of the Final Report on FOLM research. The original audio/video recordings will be retained until the findings of the study are published - although not longer than 18 months after the end of the FOLM funding period (i.e. summer 2023). The original recordings will then be deleted.
Appropriately anonymised and processed data (e.g. transcripts and translations) sets might be retained beyond the funding period of the FOLM project on Data Share – or a similar GDPR-compliant data repository – for future ethically approved research. This however depends on the content and will only take place if anonymity of the interviewees can be guaranteed.
Internal and external data sharing
Internal data sharing (i.e. within one FOLM partner organisation) and external data sharing (i.e. between FOLM Partner organisations) of participants‘ personal information is kept to a minimum and continuously scrutinised for necessity and proportionality. It is conducted purely to fulfil the non- commercial activities of arranging and conducting the interviews, plus post-interview communication with the participants.
The researchers/interviewers do not have access to the participants from the start. They need to receive their contact details from those Partner organisations in the FOLM Consortium who conduct the practical programme (i.e. LIT for Ireland, CIE and Food Bank for Poland, and Femxa for Spain) and who therefore have the contact to the FOLM participants (the pool this study recruits its participants from).
The original audio and video recordings of the interviews will not be shared outside the UoE research team. Processed (anonymised/pseudonymised) data will be shared within the FOLM Consortium as part of knowledge exchange and publication processes.
Third party sharing
A professional transcription service (such as 1st Class Secretarial Services) might be used to help with the transcriptions of the interview recordings. A service provider will only be contracted with approval of the UoE's Research and Knowledge Exchange office and/or the Research Data Support Officer to ensure data is handled confidentially and GDPR-compliant. Researcher will also use the approved service Otter.ai for automated transcriptions.
Requests from the Police or law enforcement officials: The FOLM Consortium is not legally obliged to provide information to the police, unless presented with a court order. However, FOLM partner organisations will usually choose to release information where the police, or other law enforcement agencies, can demonstrate to our satisfaction that non-release would be likely to prejudice the prevention/detection of crime or apprehension/prosecution of offenders.
For data collected for and through research activities under Work Package 3 of the FOLM funding agreement, the University of Edinburgh is the Data Controller, registered with the Information Commissioner’s Office, Registration Number Z6426984.
Who can I contact with questions and complaints?
Updates of this document
In case of changes to the nature of this research project (the interviews) that impact on processes laid out in this Participant Infromation and Privacy Notice, then this document will be updated and all current FOLM participants notified.