SCHOOL OF MEDICINE, DENTISTRY AND BIOMEDICAL SCIENCES PRIVACY NOTICE

Queen’s University Belfast (“we”, “us” and “our”) and Belfast Health & Social Care Trust are committed to protecting your personal data. The notice is addressed to potential participants on the A-STOP study and/or their parent/legal guardian, friend/relative/partner or medical practitioner, (“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. Dr Ronan McMullan, Centre of Experimental Medicine, School of Medicine, Dentistry and Biomedical Sciences, Queen’s University Belfast is Chief Investigator of the A-STOP Study. The Northern Ireland Clinical Trials Unit (NICTU), Belfast Health and Social Care Trust (BHSCT) are the clinical trials unit supporting the Chief Investigator in the conduct and co-ordination of the A-STOP Study.

HOW YOUR PERSONAL DATA IS COLLECTED

2. Information you provide: When conducting a clinical trial we will ask for information about you, such as your name, address, DOB etc. this is known as your “Personal Data”. We may also ask you for some special categories of information (for example health). This is known as your “Sensitive Personal Data”.

3. Data from other sources: We may also collect information about you from other sources and this also forms part of “Personal Data”. This could include information from:

• Your GP
• Central NHS bodies, and organisations that provide services to the NHS
• Northern Ireland Electronic Care Record
• Intensive Care National Audit & Research Centre (ICNARC)
• NHS Digital

HOW WE USE YOUR PERSONAL DATA

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

• We will use your personal data to confirm your 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 bases for processing your Personal Data are:

• 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:

• Belfast Health and Social Care Trust
• Your GP
• ICNARC
• NHS Digital

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 from 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 or BHSCT 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    

Data Protection Officer

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.