How is your information handled in research

Are you taking part in a research project? How is your data being handled?

The Leeds Teaching Hospitals NHS Trust actively promotes research with a view to improving future care. One of the key goals of the Trust is to be the ‘Centre of excellence for specialist services, research, education and innovation’.

As a NHS organisation 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 we 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, we will use your data in the ways needed 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, we will keep the information about you that we have already obtained. To safeguard your rights, we 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 wish to raise a complaint on how we 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).

Our Data Protection Officer and Information Governance Team contact be contacted at leedsth-tr.informationgovernance@nhs.net.

You can find out more about how your information is process if you are involved in a research project during your time with the hospital.

Patient information and health and care research - https://www.hra.nhs.uk/information-about-patients/

If you would like more detailed information about your specific study, then the sponsor of the research will be able to provide this. If you do not know who the sponsor is, you can ask the research team or check your participant information sheet you were given when you gave consent to take part.

Trust Fair Processing Notice

The Trust has general guidance on how your data is processed during your routine care. This is available here - Fair Processing Notice.

For Trust Staff undertaking and involved in research - we have operational guidance available on our intranet site (internal only) click here.