SCHOOL OF MEDICINE, DENTISTRY AND BIOMEDICAL SCIENCESPRIVACY NOTICE

Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to parents or legal representatives, of children enrolled in the Sedation AND Weaning In CHildren (SANDWICH) 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 Bronagh Blackwood, Centre of Experimental Medicine, School of Medicine, Dentistry and Biomedical Sciences, Queen’s University Belfast is Chief Investigator of the SANDWICH 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 SANDWICH trial.

HOW YOUR PERSONAL DATA IS COLLECTED

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

3. Data from other sources: We also collect information about your child or dependent from other sourced and this also forms part of “Personal Data”. This includes information from:

• The Paediatric Intensive Care Audit Network (PICANet)

HOW WE USE YOUR PERSONAL DATA

4. We use Personal Data and Sensitive Personal Data of your child or dependant to determine the effect of the SANDWICH Trial which is a study into the advantages and disadvantages of introducing a new coordinated approach between nurses and doctors (with greater involvement of nurses) for getting children in paediatric intensive care units (PICUs) off the ventilator (known as weaning) as soon as they no longer need it.

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:

• (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 the legal basis:

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

 

• Northern Ireland Clinical Trials Unit (NICTU), Belfast Health and Social Care Trust (BHSCT)

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

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.