SCHOOL OF MEDICINE, DENTISTRY AND BIOMEDICAL SCIENCES PRIVACY NOTICE (PARENTS)

Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to adult patients and parents or legal representatives of children enrolled in the Antifungal stewardship opportunities with rapid tests for fungal infection in critically ill patients (A-STOP) trial, (“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. Professor Ronan McMullan, Queen’s University Belfast & Belfast HSC Trust, Kelvin Laboratory Building, The Royal Hospitals Grosvenor Road, Belfast, BT12 6BA, is Chief Investigator of the A-STOP Trial. The Northern Ireland Clinical Trials Unit (NICTU), Belfast Health and Social Care Trust are the clinical trials unit supporting the Chief Investigator in the conduct and co-ordination of the A-STOP trial.  

HOW YOUR PERSONAL DATA IS COLLECTED

2. Information you provide: When you, your child or dependant are participating in the A-STOP trial we will collect information about you/them, such as age and gender. This is known as your/their “Personal Data”. We may also ask you for some special categories of information (for example health). This is known as your/their “Sensitive Personal Data”.

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

• To explore the opinions and experiences of patients and parents on the current care pathway of patients at risk of fungal infections and to examine alternative care pathways (protocols) involving new rapid tests; including identifying barriers, risk preferences and requirements for adoption of the new tests
• Following transcription and analysis of the recordings, when the qualitative component of the study has been completed, the recordings will be permanently and securely destroyed; this will occur no more than 5 years form the date of the project completion.

HOW WE USE YOUR PERSONAL DATA

4. We use Personal Data and Sensitive Personal Data in the following ways

• To confirm the participant’s long term health status
• To process communications with you as part of the study
• To analyse the results based on demographic or other information

LEGAL BASIS FOR COLLECTING AND USING YOUR PERSONAL DATA

5. 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 basis for processing your Personal Data is:

• Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

And the legal basis for processing your Sensitive Personal Data is:

• Processing is necessary for archiving purposes, scientific or historical research purposes or statistical purposes.

WHO WE SHARE YOUR DATA WITH

6. In line with our Data Protection Policy and Procedures we can share your information, including Personal Data and Sensitive Personal Data, with the following parties for the purposes set out above:

• We may share the audio-recording of interviews with a third party, external to QUB for the purpose of transcribing the interview
• Belfast Health and Social Care Trust

DATA PROCESSING OUTSIDE EUROPE

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

HOW LONG YOUR INFORMATION WILL BE KEPT

8. We will keep your Personal Data and Sensitive Personal Data for up to 5 years after the 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

9. 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.

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

11. 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

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

Derek Weir

QUB Data Protection Officer

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

The BHSCT Data Protection Officer

Data Protection Office

Belfast Health & Social Care Trust
1^st Floor Administration Building
Knockbracken Healthcare Park
Saintfield Road
Belfast
BT8 8BH

COMPLAINTS

13. 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

14. 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.