What will happen to my data?
Data protection regulation requires that we state the legal basis for processing information about you. In the case of research, this is ‘a task in the public interest.’ The University of Oxford is the data controller and is responsible for looking after your information and using it properly.
We will be using information from you and your medical records and NHS Digital (HES database) and other central NHS registries in order to undertake this study. We will use the minimum personally-identifiable information possible. In order to collect information about your longer-term complications, the study team will send identifying patient information (name, NHS number, gender, date of birth and postcode) to NHS Digital. This will allow NHS digital to link your identifying details to the hospital episode data and send back data relating your shoulder. The data that is sent back will not contain any identifying information though PRoCuRe researchers at University of Oxford could link it to your personal records using a study specific ID number, if required.
We will keep identifiable information about you for up to 12 months after the study has finished. Your medical data will be held separately from your personal details and will be linked to you through your study ID number. This excludes any research documents with personal information, such as consent forms, which will be held securely at the University of Oxford for at least 5 years after the end of the study. If you agree to your unused samples being used in future research, your consent form will be held until the samples have been depleted or destroyed, or 5 years, whichever is longer.
Your local hospital PRoCuRe team will use your name, and contact details to contact you about the research study, including, where applicable, organising the MRI scan 24 months after surgery. They will keep identifiable information about you from this study for up to 12 months after the study has finished. This excludes any research documents with personal information, such as consent forms, which will be archived at the NHS Hospital Trust site as per local Trust policy for medical notes retention for at least 5 years after the end of the study. Data protection regulation provides you with control over your personal data and how it is used. When you agree to your information being used in research, however, some of those rights may be limited in order for the research to be reliable and accurate.
Further information about your rights with respect to your personal data is available at https://compliance.web.ox.ac.uk/individual-rights You can find out more about how we use your information by contacting procure@ndorms.ox.ac.uk
