GDPR Guidance for Participants

The Research Governance Office is part of the University of Leicester, further information about the institution can be found here: All research activity taking place in the NHS requires a Sponsor. A Sponsor is an organisation that takes legal responsibility for the overall conduct of the research. The University of Leicester is registered as a research sponsor with the Department of Health and routinely takes responsibility as a Sponsor for research activities taking place within the NHS.

As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when our researchers use personally-identifiable information from people who have agreed to take part in research.  This means that when you agree to take part in a research study, your data will be used to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, the researchers will keep the information about you that they have already obtained. To safeguard your rights, they will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you participate in research sponsored by the University of Leicester, we will ensure that the researchers are transparent with your rights about how your data will be processed, used and shared. This will normally be part of the documentation provided prior to and during your participation in a research study. Any questions you have should be directed to the researchers in the first instance.

If you wish to raise a complaint on how our researchers have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Information Assurance Services, University Of Leicester, University Road, Leicester, LE1 7RH. Tel:  0116 229 7945. Email:

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