Privacy policy

Welcome to the University of Southampton’s privacy notice.

The University of Southampton respects your privacy and is committed to protecting your personal data. This notice describes how we collect and use your personal data submitted to us online, by email or on paper, in accordance with the General Data Protection Regulation (GDPR) and associated data protection legislation.

Who is the Data Controller?

The Southampton Clinical Trials Unit at the University of Southampton is the “data controller" for the information that you provide to us when visiting this website, using our online forms, emailing us or filling in paper forms. This means that we decide how to use it and are responsible for looking after it in accordance with the GDPR.

You can contact the University of Southampton about the data it keeps about you by emailing the Head of Research Integrity and Governance at [email protected].

What personal data will be processed?

Your personal data collected on the EXCALIBUR Trial website includes:

Your Name 
Your Email Address 
Your Telephone Number 
Your Address 
Your GP Practice 
Your consent to take part in the trial 

Why is my data being used?

Personal data entered into the EXCALIBUR Trial website will be used exclusively to conduct the EXCALIBUR clinical trial. Personal data is required to verify who you are for the electronic consent process and during the trial. Your telephone and email address will be used by the research staff to contact you during your time on the trial. Your address will be used to provide you with trial materials, if necessary. Information about your GP practice will be used to ensure you are flagged to the correct team of doctors and nurses working on the trial.

More information about the trial itself can be found on the Patient Information Sheet [Link]. Full justification for collecting the data above can be found on the Patient Registration Page in the “Why are we asking this question?” field underneath each data point [Link].

How will data be processed for the trial?

Data will be processed in accordance to both the EXCALIBUR Patient Information Sheet [Link] and the University of Southampton’s Data Protection Policy [Link]. You can also read the University of Southampton’s Privacy Notice for Research Participants here [Link].

Who will have access to my data?

Access to your data will be restricted to delegated staff in the University of Southampton and at your GP site. Access to registration data may also be granted to delegated third-party website design staff to provide tech support. Strict guidelines and confidentiality agreements will be adhered to in these cases. All use of your data will be solely for the purposes of conducting the trial. Website audit trails will ensure that no data is accessed unnecessarily.

How is my data kept private and secure?

The University of Southampton has a legal duty to keep information about you confidential. There are strict codes of conduct in place to keep your information safe. The University of Southampton abides by the Data Protection Act 2018 that mirrors the EU General Data Protection Regulation 2016 (GDPR), and the University Data Protection Policy. You can find the University of Southampton’s Data Protection Policy here [Link].

The University’s privacy notice for research participants provides more information on how the University of Southampton collects and uses your personal data when you take part in one of our research projects and can be found by clicking here [Link].

The University of Southampton will keep your personal data for a minimum of 10 years after the research study has finished according to the University research data management policy here.

What are my rights?

You have the right to contact the University of Southampton to ask for the following: to be informed about the data held about you, to access the data held about you, to have the data held about you edited or updated where it is inaccurate or incomplete, to request that data held about you be erased, to request that the use of your data be restricted, and to object to the use of your data.

Please note, however, your rights to require erasure of your data and to object to the use of your data in the context of a project like this are limited under data protection law. This is because your data is used for academic research purposes and needs to be managed in specific ways in order for the research study’s results to be concluded in a reliable and accurate fashion. Additionally, information used to verify your consent to take part in the trial may be retained for audit purposes.

If you would like to make a rights request, please contact [email protected].

Where will my data be stored and will it be shared?

Your personal registration data entered onto this website will be stored on a secure database on servers in the UK.

Your pseudonymised research data (collected once you have entered the trial) will be stored on servers located in the US. Pseudonymised means personal identifiers such as your name and full date of birth are removed and replaced with a Trial ID.

Should you consent for your research data to be shared with other researchers for future ethically-approved research, it will undergo a further de-identification process to ensure that the data cannot be linked back to you.

No personal data will be shared in any reports or outputs from the trial.

What is the lawful basis for collecting, storing, and using my data?

Data protection law requires us to have a valid legal reason (‘lawful basis’) to process and use your Personal data. The lawful basis for processing personal information in this research study is for the performance of a task carried out in the public interest.

Personal data collected for research will not be used for any other purpose.

Are you using special category data about me?

No, this website will not collect any special category data about you.

How can you raise a complaint?

If you would like to raise a complaint on how your personal data is being handled, you can contact the University of Southampton’s Data Protection Officer who will investigate the matter.

The Data Protection Officer
Legal Services
University of Southampton,
Highfield
Southampton,
SO17 1BJ.

E-mail: [email protected]

More information can be found at:  https://www.southampton.ac.uk/about/governance/freedom-of-information.page.

If you are not satisfied with the response, or if you believe that your personal data is handled in a way that is not lawful, you can complain to the Information Commissioner’s Office (ICO). See their website at ico.org.uk.