Saving Faces, as the data controller, 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 data is not used for any automated decision-making, including profiling.
The purpose of the SEND study is to find better ways of treating patients with early mouth cancer by comparing two standard surgical treatments. We want to determine if the use of a selective neck dissection used electively in patients with small tumours and no clinical evidence of neck metastasis improves survival, disease-free survival and loco-regional disease control rates. We will use the data collected from patients who have consented to participate in this study to follow up their health status.
For more information, please click here to read the Patient Information Sheet.
The lawful basis for the processing of data for the SEND study is legitimate interests. The mission of Saving Faces is to educate, fund and lead research into reducing the incidence of facial injuries, disorders and diseases including oral cancer. The study has been developed and is managed by Saving Faces and is the only nationwide multicentre pragmatic trial ever conducted regarding the surgical management of head and neck and mouth cancer. The lawful basis for the processing of health data is public interest as this research study has the potential to improve survival, disease-free survival and loco-regional disease control rates for head and neck cancer patients.
If you wish to withdraw from the study, you can contact us by email firstname.lastname@example.org or call 020 3417 7757 or speak to your surgeon about this.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer (please email email@example.com) 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 (https://ico.org.uk/).
SEND Transparency Information for SEND, NON SEND and SEND NR patients
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 https://www.bartshealth.nhs.uk/privacy under the General Data Protection Regulation section, and at https://www.hra.nhs.uk/information-about-patients/
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 for 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, but they will have access to your date of birth.
Your GP is informed if you decide to participate in this study. For the purposes of data linkage, we send your name, date of birth and NHS number to NHS Digital (so that records maintained by the Office for National Statistics may be used to follow health status) and we receive back in the event of a patient death, the cause and date of death. This information is not shared with any other organisation.
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.