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About this notice
The University of East Anglia (UEA) is a public research university based in Norwich, England. UEA and is a registered data controller of your information, which means we collect, use and store personal information about you when you take part in ‘Share Your Story’.
What information we collect about you
During your involvement with UEA, the following personal information is collected, used, and stored securely by us:
Identifying Data – information that identifies you including your name, age, town or region
Your Preferences – information about how you like to be contacted
Contact Data – information used to contact you including phone numbers and email address
Sensitive Information – information that is more sensitive and may include details about your health and medications.
How and when we collect this information
UEA will collect information about you when you complete our form for Share Your Story.
Why we collect and how we use this information
We will only use your personal data for the purposes for which we collected it, unless we consider that we need to use it for another related reason and that reason is compatible with the original purpose. If we need to use your data for an unrelated purpose, we will seek your consent to use it for that new purpose.
Lawful basis for using your data
UEA may use your information with your consent
To collect your experiences for Share your story
To publicise your experiences for promotion or raising awareness of the IMAB‑Qi study
To contact you about future media use of your story
Sensitive Information
Access to, and the sharing of, this kind of ‘special category’ personal information has extra protection. Where we do use your sensitive personal information, we will have obtained your explicit consent.
You can change your mind at any time. If you want to withdraw your consent please tell us by contacting the IMAB‑Qi study team at imabqi@uea.ac.uk or the University’s Data Protection Officer at dataprotection@uea.ac.uk.
Who we may share your information with
UEA may share your information with your consent in publicity and media about the IMAB-Qi study.
Any patient story that you submit will only be used in conjunction with promoting / raising awareness about the IMAB-Qi study and your data will not be used for any other purpose
Any patient story you submit will be anonymised; if it is used to promote the IMAB-Qi study, it will not be possible to identify you
We may convert your patient story into an audio file using an AI voice
We may use sections of your story rather than the whole piece
We will ask for your consent to use your data in this way.
We will not normally disclose your personal information to other external organisations without your consent unless it is in the event of a medical emergency.
How long we keep your information
We will keep your personal information only as long as it is necessary for the purpose it was collected and in accordance with UEA’s records retention schedule. The personal data you provide in this form will be retained until the IMAB-Qi project ends in 2029 and then for 5 years afterwards and then securely destroyed.
UEA will always store your personal information safely and will never disclose it to any other person unlawfully.
Your rights
Under data protection law, you have rights including:
Right of access – you can ask us for copies of your personal information (this is known as a Data Subject Access Request or SAR)
Right to rectification – you can ask us to rectify personal information you think is inaccurate
Right to erasure - you can ask us to erase your personal information
Right to restrict processing – you can ask us to restrict how we use your personal information
Right to object to processing – you can object to us using your personal information
Right to data portability – you can ask that we transfer the personal information you gave us to another organisation, or to you.
Please note, these rights are not absolute and the requirement for UEA to comply with your request depends on the purpose for our processing. You don’t need to pay any charge for exercising these rights. If you make a request, we have one month to respond to you.
How to contact us
Please contact UEA’s Data Protection Officer at dataprotection@uea.ac.uk if you would like any further information; if you wish to exercise any of your data rights; if you believe your personal information has been breached; or if you have any other concerns about how your personal information is being used by UEA.
If you are still not happy after you have spoken to us, you can contact the ICO:
Online - Contact us - public | ICO or by phone - ICO Helpline number: 0303 123 1113
Changes to this privacy notice
We keep our privacy notices under regular review.
This privacy notice was last updated on 12 June 2026