GRAD Trial Transparency Information

Saving Faces uses personally-identifiable information to conduct research to improve health, care and services. 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).

Please contact our Data Protection Officer at info@savingfaces.co.uk

GRAD Transparency Information – 16 October 2017, Version 5

Queen Mary University of London / Saving Faces is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Queen Mary University of London Saving Faces will keep identifiable information about you for 20 years after the study has finished. 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. You can find out more about how we use your information at http://www.jrmo.org.uk/performing-research/conducting-medical-research/setting-up-a-study/#16 under what is GDPR section.

Saving Faces / NHS Trusts will use your name, NHS number, hospital number, date of birth, health information, gender, ethnic origin and contact details such as address and telephone number to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from Queen Mary University of London / Saving Faces and regulatory organisations may look at your medical and research records to check the accuracy of the research study. NHS Trusts will pass these details to Saving Faces along with the information collected from you and your medical records. The only people in Queen Mary University of London / Saving Faces who will have access to information that identifies you will be people who need to contact you to study purposes or audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number or contact details. NHS Trusts will collect information from you and your medical records for this research study in accordance with our instructions. NHS Trusts will keep identifiable information about you from this study for 20 years after the study has finished.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.

Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.

Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

For more information, please click here to read the Patient Information Sheet.

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