Privacy Notice for Research Participants
This Privacy Notice provides information on how Oxford Brookes University (Oxford Brookes) collects and uses participant’s personal information when you take part in one of our research projects. Please refer to the research Participant Information Sheet for further details about the study and what information will be collected about you and how it will be used.
Oxford Brookes is the Data Controller of any data that you supply for this research. This means that we are responsible for looking after your information and using it lawfully. We will make the decisions on how your data is used and for what reasons.
Why do we need your data?
Bereavement in the intensive care unit (ICU) can be a challenging experience for families, particularly for children, who may struggle to understand and cope with the loss. We are interested in exploring ICU nurses’ experiences of supporting children and their families during a bereavement on the adult ICU. By understanding more about your experiences, we hope to identify strategies that can help improve the bereavement experience for children, families and those that care for them at this time. A good method to fully understand these experiences is by gathering data through interviews.
Oxford Brookes’ legal basis for collecting this data
Oxford Brookes’ legal basis for collecting this data is: public task. Your Personal Data will be used in academic research. Oxford Brookes University is a public body and staff and students carry out research in line with the University’s legal powers and constitution. Your consent is an ethical requirement. Oxford Brookes University’s legal basis for processing your Personal Data (or information) is as set out in Art 6 UK GDPR.
Special Category Data
Oxford Brookes may ask you for sensitive data such as: racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, data concerning health or sexual life, genetic/biometric data. This is defined by law as Special Category Data. If Oxford Brookes requests this data it can only be used because one of the following processing exemptions applies as set out in Art 9 UK GDPR:
❖ You consent to share this information
❖ Oxford Brookes needs to use this data for scientific or research purposes
What type of personal data will Oxford Brookes use?
Personal data collected will be: ethnicity, religion, current employment status and attendance at professional training and development courses. This data will be collected for analysis purposes. Your name and email addresses will be collected only for the purpose of contacting you and will be deleted at the end of the study. Data which is identifiable will only be seen by the research team and will not be shared with anyone else until anonymised.
Who will Oxford Brookes share your data with?
Your name and email address will be used on Google Mail to contact you. Personal data will be collected via Zoom audio recordings. The Zoom audio-recording will be downloaded and saved securely on Google Drive. Anonymised transcripts will be shared with an advisory group (a group of advisors with professional ICU expertise or lived experience who are helping the researcher with this project) who will assist in the interpretation of the data. They will not know who you are as the researcher will ensure all identifying information has been removed completely. Your anonymised data will be shared with the advisory group securely via Google Drive. A summary of the anonymous advisory focus group data analysis will be shared with all participants. The anonymous results of the study will be shared with other people through meetings, seminars, conferences and journal publications. Data will be kept securely by Oxford Brookes University for ten years. Anonymous data will be stored via the Oxford Brookes University institutional Research and Digital Assets Repository (RADAR) and raw data will be archived via Arkivum, which is the data archiving solution used by Oxford Brookes University. Anonymous data will also be shared via open data systems for an indefinite period.
Will Oxford Brookes transfer my data outside of the UK?
Yes. Your data will also be collected via Zoom which stores data in a data centre in the European Union, which will then be downloaded to the researcher’s University Google Drive. Your data will be stored on Google Drive which stores its data in a data server in the European Union. Your data will be analysed via NVivo, which stores their data in a data centre in Europe.
What rights do I have regarding my data that Oxford Brookes holds?
❖ You have the right to be informed about what data will be collected and how this will be used
❖ You have the right of access to your data
❖ You have the right to correct data if it is wrong
❖ You have the right to ask for your data to be deleted
❖ You have the right to restrict use of the data we hold about you
❖ You have the right to data portability
❖ You have the right to object to Oxford Brookes using your data
❖ You have rights in relation to using your data in automated decision making and profiling.
Your rights will depend on the legal ground used to process your data.
Where did Oxford Brookes source my data from?
The data is coming from audio-recorded interviews via Zoom.
Are there any consequences of not providing the requested data? There are no consequences of not providing data for this research. It is purely voluntary. Any data collected from you can be withdrawn up until 28 days post interview. This means that your contributions will not be included in the final findings if you choose to withdraw before that stage. Only information identifiable as being yours will be able to be removed.
Will there be any automated decision making using my data?
There will be no use of automated decision making in scope of UK Data Protection and Privacy legislation.
How long will Oxford Brookes keep your data?
Data will be stored securely for 10 years in line with Oxford Brookes University policy. If you do not want to receive a summary of the research data, your email address will be deleted after you have confirmed receipt of your voucher to thank you for taking part. If you do want to receive a summary of the research data, your email address will be kept until 14 days after the summary has been sent out to you.
Who can I contact if I have concerns?
If you have any questions about the research study, please contact the research team. Their contact details are listed on the Participant Information Sheet. If you have any concerns about the way in which the study has been conducted, please contact the Chair of the University Research Ethics Committee at ethics@brookes.ac.uk. For further details about information use contact the Information Security Management team on info.sec@brookes.ac.uk or the Data Protection Officer at brookesdpo@brookes.ac.uk. You can also contact the Information Commissioner’s Office via their website ico.org.uk.