School of Healthcare privacy notice for research participants

This privacy notice provides information about how the University of Leicester collects and uses your personal information when you take part in this research projects.

Please also refer to the participant information sheet given to you for further details about the research project, what information will be collected about you, and how it will be used.

The University of Leicester will usually be the data controller of any data that you supply for this research. This means that we are responsible for looking after your information and using it properly. This means that the University will make the decisions on how your data is used and for what reasons. The exception to this is joint research projects, if this is applicable you will be informed on the participant information sheet as to the other partner institution(s) who will also have responsibilities for looking after your information. You can access more information on this via the University’s Information Assurance Services:

Information Assurance Services
University of Leicester
University Road
+44 (0)116 229 7945

Why do we need your data?

If you have been invited to participate in our research, we may need your data to;

  • Contact you to tell you more about the research.
  • Help us decide who is eligible to participate.
  • Ensure our research is inclusive and representative.
  • Answer our research question/topic.
  • Keep in contact to update you about study progress and publications.

More specific information on why and what data we will be collecting will be included in each study’s participant information sheet.   

University of Leicester’s legal basis for collecting this data is:

Processing is necessary for the performance of a task in the public interest such as research.

If the university asks you for sensitive data such as; your racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, data concerning health or sexual life, genetic/biometric data or criminal records, the University of Leicester will use these data because:

Processing is necessary for scientific or research in the public interest.

What type of data will the University of Leicester use?

The type of data we collect about you may include:

  • Your name.
  • Your gender.
  • Contact details.
  • The role/group you represent, e.g. patient, practitioner, commissioner etc.
  • Information about your experiences/outcomes of health conditions, the healthcare system etc.
  • Audio and/or video recordings of group discussions.

More specific information on why and what data we will be collecting will be included in each study’s participant information sheet.  

Who will the University of Leicester share your data with?

Our researchers often work with partner institutions, collaborators and/or external funders. Any external parties will be listed in the participant information sheet, as well as what data, if any, that will be shared with these. Any data that is shared or discussed with external funders will first be anonymised.  

Will the University of Leicester transfer my data outside of the UK?

No, your data will remain in the UK.

What rights do I have regarding my data held by the University of Leicester?

Your normal rights under the Data Protection Act and the General Data Protection Regulation apply. However, we need to manage your records in specific ways for the research project to be reliable. This means that we will not [always] be able to let you see or change the data we hold about you.

You can stop being part of the research project at any time, without giving a reason, but we will keep information about you that we already have and continue to use this for the purposes of the research project as outlined in the Participant Information Sheet.

Are there any consequences of not providing the requested data?

There are no consequences of not providing data for this research. It is purely voluntary.

Will there be any automated decision making using my data?

There will be no use of automated decision making in scope of UK Data Protection and Privacy legislation.

How long will the University of Leicester keep my data?

In line with the law, we will only keep your data for as long as we need to so that we can fulfil our research objectives.

Who can I contact if I have concerns?

In the event of any questions about the research project, please contact the researchers in the first instance. Contact details can be found in the participant information sheet.

If you have any concerns about the way in which the research project has been conducted, please contact the Chair of the University Research Ethics Committee at ethics@leicester.ac.uk.

The University of Leicester Data Protection Officer is:

Data Protection Officer
University of Leicester,
University Road, Leicester, LE1 7RH
0116 229 7640

For further details about information security, please contact the Information Assurance Services team.

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