PolyPrime Patient PRIVACY NOTICE
Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to patients who are taking part in the PolyPrime study, (“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.
HOW YOUR PERSONAL DATA IS COLLECTED
2. Information you provide: When conducting the research, we will ask for information about you, such as your name, address, age and telephone number. This is known as your “Personal Data”. We may also ask you for some special categories of information, for example information about your GP records, quality of life and information about your use of health and social care services (such as hospital admissions). 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 “Sensitive Personal Data”. This includes information from:
- Your GP medical records, which will be accessed to obtain information relevant to the study, such as medical history, medical conditions, biomedical data (i.e. test results), prescribed medications and health and social care service use.
HOW WE USE YOUR PERSONAL DATA
4. We use your Personal Data and Sensitive Personal Data in the following ways:
- To contact you via letter to invite you take part in this study.
- To post surveys (or contact you via telephone to complete these) as part of the research study.
- To analyse your medical records (i.e. medical history, medical conditions, prescribed medications and health and social care service use) and your responses to any questionnaires to allow us to process the results of the study.
- If you agree to have your appointment with the GP tape-recorded (audio-recorded) or participate in an interview at the end of the study, we will listen to these recordings to find out how the review of medicines went. We will only audio-record your sessions with your permission and consent.
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”. In certain circumstances we may ask for your consent to process your information. The legal basis for processing your Personal Data is;
- Public task: the processing is necessary to perform a task in the public interest or in our official functions, and the task or function has a clear basis in law.
- When processing your ‘special category’, we will do so in line with Article 9 of the GDPR and will use the lawful basis j) Processing is necessary for archiving purposes in the public interest, 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:
- Researchers in Queen’s University Belfast and Trinity College Dublin may share data with each other during this study.
- We may also share pseudonymised data (meaning that all identifiable information such your name will be replaced with unique ID codes) with research partners who are part of this study, which includes the Royal College of Surgeons in Ireland (RCSI), National University of Ireland Galway (NUIG), Northern Ireland Clinical Trials Unit (NICTU), and the Belfast Health and Social Care Trust (BHSCT).
- We may also share pseudonymised data relating to your responses to a quality of life questionnaire about your use of medicines with some other researchers at the University of Sydney who are working with us.
- If you agree to have your appointment with the GP tape-recorded (audio-recorded) or participate in an interview at the end of the study, we may share the pseudonymised audio-recordings with a transcription company which will be responsible for typing up the information collected from the appointment or the interview.
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 five 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.
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
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.