SCHOOL OF NURSING AND MIDWIFERY

PATIENT AND FAMILY-INITIATED ESCALATION OF CARE STUDY PRIVACY NOTICE

Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to ‘Patient and family-initiated escalation of care’ study participants, (“you” and “your”). This Privacy Notice tells you why we need to collect personal information about you, what we will do with it, and how we will look after it. It also tells you about your legal rights in relation to your Personal Data. If you have any questions about this privacy notice, please contact us. Contact details are provided below.

WHO WE ARE

1. We are Queen’s University Belfast, a university with a reputation for excellence in education and research and a member of the Russell Group. Founded in 1845 as Queen's College Belfast, we became an independent university in 1908.

HOW YOUR PERSONAL DATA IS COLLECTED

2. Information you provide: When conducting this research study we will ask for information about you, such as your name, telephone number and address. This is known as your “Personal Data”. We may also ask you for some special categories of information for example, an interview or focus group about your experience of patient deterioration and/or ‘patient and family-initiated escalation of care schemes’. If you are a patient participant, we will also ask for your permission to access your patient notes/records so that we can more fully appreciate your illness experience. This is known as your “Sensitive Personal Data”.

HOW WE USE YOUR PERSONAL DATA

3. We use your Personal Data and Sensitive Personal Data in the following ways:

• We will use your telephone number and address to contact you about the study, to arrange an interview or focus group and to inform you of the study results.
• We will use your interview/focus group to help to inform the design of an intervention that may allow patients and relatives to have a greater voice in calling for help if they were concerned that the patients’ condition had deteriorated. After we have conducted the interview all your personal details will be removed so that you can remain confidential.

LEGAL BASIS FOR COLLECTING AND USING YOUR PERSONAL DATA

4. We will only use your Personal Data if we have valid reasons for doing so. These reasons are known as our “legal basis for processing”. The legal bases for processing your Personal Data are;

• (e) Public task: the processing is necessary for you to perform a task in the public interest or for your official functions, and the task or function has a clear basis in law.

When processing your ‘sensitive data’, we will do so in line with Article 9 of the GDPR and will use the appropriate exemption for each instance of sharing and/or processing, which is:

• (j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes

DATA PROCESSING OUTSIDE EUROPE

5. We will not transfer your Personal Data and Sensitive Personal Data outside of the European Economic Area.

HOW LONG YOUR INFORMATION WILL BE KEPT

6. We will keep your Personal Data and Sensitive Personal Data for up to 5 years from end of the study. We will only keep your information if we need it for one of the reasons described above. We place great importance on the security of the Personal Data that we hold, including the use of physical, technological and organisational measures to ensure your information is protected from unauthorised access and against unlawful processing, accidental loss, alteration, disclosure, destruction and damage.

YOUR RIGHTS

7. The Data Protection Act 2018 provides you with a number of legal rights in relation to your Personal Data, including the right:

• to request access to your Personal Data;
• to request correction of your Personal Data that is wrong or incomplete;
• to request erasure or the restriction of processing of your Personal Data;
• to request the transfer of your Personal Data in a structured; commonly used machine-readable format;
• not to be subject to automated decision making; and
• to withdraw your consent.

8. If you wish to exercise any of the rights set out above, or require further information about any of the rights, please contact us.

9. There may also be times where we cannot stop using your Personal Data when you ask us to, but we will tell you about this if you make a request.

CONTACTING US

10. If you have any questions or comments about this privacy notice, the University’s Data Protection Officer can be contacted at:

Derek Weir

Data Protection Officer

Registrar’s Office
Lanyon South
Queen’s University Belfast
University Road
BT7 1NN
info.compliance@qub.ac.uk

COMPLAINTS

11. You have the right to complain about how we treat your Personal Data and Sensitive Personal Data to the Information Commissioner’s Office (ICO). The ICO can be contacted at:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

CHANGES TO THIS NOTICE

12. We may update this Privacy Notice from time to time. We will notify you of the changes where we are required by law to do so.