CENTRE FOR PUBLIC HEALTH
MOSAICC STUDY PRIVACY NOTICE

Queen’s University Belfast is committed to protecting your personal data. The notice is addressed to patients taking part in the MOSAICC study and also to non-blood relatives taking part in the study.

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 participating in the MOSAICC study we will ask for information about you, such as your name, DOB, contact information, etc. this is known as your “Personal Data”. We may also ask you for some special categories of information (for example health information). This is known as your “Sensitive Personal Data”.

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

• Health information from the NHS Trust Sites including medical records
• Work/Residence Calendar
• Clinical notes (hospital cases only).

HOW WE USE YOUR PERSONAL DATA

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

• To process communications with your throughout the study and to keep you informed
• To analyse data against medical or demographic 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”.

• (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.

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:

 

• Relevant QUB research personnel.

DATA PROCESSING OUTSIDE EUROPE

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

HOW LONG YOU’RE INFORMATION WILL BE KEPT

8. 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

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.

CONTACTING US

11. 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

12. 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

13. 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.