CYPHCEs FOCUS GROUP STUDY PRIVACY NOTICE

Queen’s University Belfast is committed to protecting your personal data. The notice is addressed to patients (and parents) recruited to CYPHCEs (children and young people’s healthcare experiences) Focus Group 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 conducting our research, we will ask for information about you, such as your name and an email address. This is known as your “Personal Data”. Other categories of information that might be provided to the researchers is known as your “Sensitive Personal Data”. Sensitive personal data may be gathered in the focus group if offered when discussing experiences of healthcare.

HOW WE USE YOUR PERSONAL DATA

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

• The researcher will audio-record the participants focus group conversations. These will be transcribed verbatim (word for word into written form) an anonymised.
• The researcher’s comments from the focus group will be documented in an anonymised form.
• The lead researcher, along with the research team, will read and re-read the transcripts and consider the comments to generate findings or conclusions.
• A selection of the quotations (anonymised) will be published in the lead researcher’s PhD thesis and in academic journals interested in the topic.
• The findings and conclusions that the researchers draw from the transcripts will be published in the PhD thesis and in academic journals.
• A summarised copy of these findings will be sent to those participants who have requests this. Again, the information sent will be anonymised.    

LEGAL BASIS FOR COLLECTING AND USING YOUR PERSONAL DATA

4. 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. At other times we may be required to process your information to enable us to fulfil our part of the contract we have with you. There are circumstances where we have a legitimate interest to process your personal data, for example to provide you with a service which you have requested. The legal bases 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 controll

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 and is in the public interest.

WHO WE SHARE YOUR DATA WITH

5. Your data will not be shared with anyone outside of the Queen’s University research team.

DATA PROCESSING OUTSIDE EUROPE

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

HOW LONG YOUR INFORMATION WILL BE KEPT

7. We will keep your Personal Data and Sensitive Personal Data for up to 5 years from date of collection.Child 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

8. 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.

9. If you wish to exercise any of the rights set out above, or require further information about any of the rights, please contact us.

10. 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

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.