Confidentiality and Use of Participants Data

Participant confidentiality

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Pseudonyms will be used and identifiers will be removed once the audio recording has been transcribed. However, confidentiality cannot be guaranteed (participants may be identifiable to a third party), due to the limited size of the participant sample and information participants may give during the interview. The investigator will work with the participant in an attempt to minimise and manage the potential for indirect identification of participants.

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Will interviews be recorded and how will the recorded media be used?

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Participants will be audio recorded. The audio recordings of their activities made during this study will only be used for analysis. No other use will be made of them without written permission. Audio recordings will be accessed by members of the research team and transcribers. 

Interviews will be audio recorded on a password protected audio recording device. The recording will be transferred to secure storage and deleted from the recording device as soon as possible. Recordings will be deleted from secure storage once the research has been submitted and accepted. 

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What will happen to the data provided and how will taking part in this project be kept confidential?

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The information participants provide as part of the study forms the research study data. Any research study data from which participants can be identified is known as personal data. Personal data will be deleted once the researcher’s thesis has been submitted and accepted. Personal data will only be accessible to the research team. Audio recordings will be accessible to transcribers. Participants names, phone numbers and Skype contacts, will be linked to their interview (transcript and audio version) using a linked code. The link from the code to their identity will be stored securely and separately from the coded data. Participants will not be identifiable in any ensuing reports or publications. We will use pseudonyms in transcripts and reports to help protect the identity of individuals. Anonymised data may be used for additional or subsequent research studies and will be stored in an academic online database. All personal information that could identify participants will be removed or changed before information is shared with other researchers or results are made public. Phone numbers and Skype names will be blocked and deleted from the researchers device after interview. Subsequent contact will take place over email. 

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Participants data protection notice

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Liverpool John Moores University (LJMU), UK, is the sponsor for this study. We will be using information from you in order to undertake this study and will act as the data controller for this study This means that we are responsible for looking after your information and using it properly.  LJMU will keep identifiable information about you until the researcher has submitted her PhD.

As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research.  This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study after data analysis has begun we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information. You can find out more about how we use your information by contacting secretariat@ljmu.ac.uk.

If you are concerned about how your personal data are being processed, please contact LJMU in the first instance at secretariat@ljmu.ac.uk. If you remain unsatisfied, you may wish to contact the Information Commissioner’s Office (ICO). Contact details, and details of data subject rights, are available on the ICO website at: https://ico.org.uk/for-organisations/data-protection-reform/overview-of-the-gdpr/individuals-rights/

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

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If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO). Our Data Protection Officer can be contacted on secretariat@ljmu.ac.uk

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