SCHOOL OF NURSING AND MIDWIFERY PRIVACY NOTICE
Passion-HF

Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to patients with heart failure and their caregivers. 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. The School of Nursing and Midwifery is ranked the top 50 in the world and provides undergraduate, postgraduate and specialist education alongside world leading research projects.

HOW YOUR PERSONAL DATA IS COLLECTED

2. Information you provide: When participating in this study, we will ask for information about you, such as your name, date of birth etc. This is known as your “Personal Data”. We may also ask you for some special categories of information (for example health and general wellbeing). 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 care professionals who have identified you as a potential participant for this study.

HOW WE USE YOUR PERSONAL DATA

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

• Data you provide in the questionnaire, which will include social & demographic details.
• Your data will be used for the purposes of research into the use and feasability of an eHealth product.

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;

• (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.

Under the German data protection legislation (BDSG), it is required that any processing of health data must be achieved through a consent basis for processing. This is in contrast to the UK’s DPA 2018, which does not. As such, we will ask for your consent to process your health data as part of this study, in accordance with the BDSG requirements.

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:

• Pseudonymised data will be stored with the SANANET CARE BV.

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 date of collection 2018 to  end of service 2025. 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. Where we need to collect your Personal Data, whether for the purposes of providing a service you have requested or under the terms of a contract we have with you, and you fail to provide that information when requested, we may not be able to provide the service or perform the contract. We may, therefore, have to cancel the contract or the service we provide to you but we will notify you if this is the case at the time.

12. 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

13. 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

14. 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

15. 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.