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How we use your information (GDPR)

The General Data Protection Regulation (GDPR), effective from 25 May 2018, replaces the Data Protection Act 1998.

Just as you can rely on confidentiality as a patient, you can also expect this as a research participant. All research conducted in the NHS requires that data is collected, stored and anonymised in accordance with the General Data Protection Regulation (GDPR).

As an 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).

Further information regarding how health researchers use information from patients is available in this downloadable leaflet GDPR Guidance. If you are asked to take part in research, you can ask what will happen in the study.

Read UH Bristol Trust's Privacy Notice.

UH Bristol Trust Data Protection Officer  

Donating tissues and samples

Many clinical trials will ask for your consent to donate your blood, tissue and other samples. This would be strictly for the medical and scientific purposes that will have been detailed in the studies participant information leaflets.

When consenting to a trial, you may well also be asked to consent for your samples to be used in subsequent ethically approved trials.

If you do decide to donate samples and then change your mind, you have the right to withdraw your consent at any time.

All samples donated to research are stored securely and in accordance with the Human Tissue Act 2004.

If your samples are required to be transported for analysis outside of UH Bristol, you will be notified of this in the consent form, and an ethically approved process for transporting the samples securely will be in place.