What happens if I agree to take part?
If you take part in the study, you will be asked to:
Completion of questions should take less than five minutes. The time you spend telling your story is up to you.
Are there any risks associated with taking part?
The research has been approved by the College of Human and Health Sciences Research Ethics Committee, Swansea University, and the Faculty of Health Ethics and Integrity Committee at University of Plymouth. While we hope the process of telling your story will be beneficial, there are risks that this may result in strong emotions and upset. The study is truly anonymous, and we cannot provide individual psychological support to participants. So, please be aware of this before taking part. Links to potential sources of support are available throughout the study, and you can stop your participation at any time you wish.
Now the legal bit….
Data Protection and Confidentiality
Your data will be processed in accordance with the Data Protection Act 2018 and the General Data Protection Regulation 2016 (GDPR). All information collected will be kept strictly confidential. Your data will only be viewed by the research team.
All electronic data will be stored as a password-protected computer file on a mainframe computer at Swansea University. All stories will be transcribed, any potentially identifying details (hospital, ward, names of colleagues etc) removed. The audio-recording will then be deleted. Any paper records will be stored in a locked filing cabinet in the chief researcher’s office.
Due to the anonymous data collection process it will not be possible to identify and remove your data at a later date, should you decide to withdraw from the study. You will however be able to delete your data at any point during the study should you choose to do so.
What will happen to the information I provide?
An analysis of the information will form part of our report at the end of the study and may be presented to interested parties and published in scientific journals and related media. Note that all information presented in any reports or publications will be anonymous and unidentifiable.
Is participation voluntary and what if I wish to later withdraw?
Your participation is entirely voluntary. If you choose to withdraw from the study while taking part, you can stop and remove the recording. The anonymous nature of the study will not allow us to remove your data at a later date.
Data Protection Privacy Notice
The data controller for this project will be Swansea University. The University Data Protection Officer provides oversight of university activities involving the processing of personal data, and can be contacted at the Vice Chancellors Office. Your personal data will be processed for the purposes outlined in this information section. Standard ethical procedures will require you provide your consent to participate in this study by completing the online consent form that follows this information. The legal basis we will rely on to process your personal data is necessary for the performance of a task carried out in the public interest. This public interest justification is approved by the College of Human and Health Sciences Research Ethics Committee, Swansea University.
How long will your information be held?
Data will be preserved and accessible for a minimum of 20 years after completion of the research.
What are your rights?
You have a right to access your personal information, to object to the processing of your personal information, to rectify, to erase, to restrict and to port your personal information. Please visit the University Data Protection webpages for further information in relation to your rights.
Any requests or objections should be made in writing to the University Data Protection Officer:-
University Compliance Officer (FOI/DP), Vice-Chancellor’s Office, Swansea University, Singleton Park, Swansea, SA2 8PP
Email: [email protected]
How to make a complaint
If you are unhappy with the way in which your personal data has been processed you may in the first instance contact the University Data Protection Officer using the contact details above.
If you remain dissatisfied, then you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: –
Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF
What if I have other questions?
If you have further questions about this study, please do not hesitate to contact the lead researcher, you can contact Prof Paul Bennett by clicking here.
*Photo by Jonathan Borba from Pexels