SCHOOL OF MEDICINE, DENTISTRY AND BIOMEDICAL SCIENCES
PHIND TRIAL PRIVACY NOTICE
Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to patients or their representatives (“you” and “your”), enrolled in the PHIND trial: a clinical evaluation of a Point of Care (POC) assay to identify PHenotypes IN Acute Respiratory Distress Syndrome. 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 Danny McAuley, Centre for Experimental Medicine, School of Medicine, Dentistry and Biomedical Sciences, Queen’s University Belfast is Chief Investigator of the PHIND trial. The Northern Ireland Clinical Trials Unit (NICTU) is the clinical trials unit supporting the Chief Investigator in the conduct and co-ordination of the PHIND trial. Belfast Health and Social Care Trust (BHSCT) are joint data controllers with Queen’s University Belfast.
HOW YOUR PERSONAL DATA IS COLLECTED
2. Information you provide: When you are participating in the PHIND trial we will collect information about you, such as your age and gender. 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 also collect information about you from other sources and this also forms part of “Personal Data”. This includes information from:
- Your GP
- Central UK NHS bodies and organisations that provide services to the NHS i.e. NHS Digital
HOW WE USE YOUR PERSONAL DATA
4. We use Personal Data and Sensitive Personal Data from you to determine the effect of the PHIND Trial, which is a study to identify and define hyper and hypo-inflammatory phenotypes in patients with Acute Respiratory Distress Syndrome (ARDS) and to determine clinical outcomes associated with each phenotype. Your data will also be used to communicate with you, analyse your medical records and current care plan and to facilitate the study’s analysis of outcomes.
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:
- 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.
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.
12. If you have any questions or comments about this privacy notice, the University’s Data Protection Officer can be contacted at:
Data Protection Officer
Queen’s University Belfast
The Belfast Health & Social Care Data Protection Office can be contact at:
Data Protection Office
Belfast Health & Social Care Trust
1st Floor Administration Building
Knockbracken Healthcare Park
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
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.