The University of Birmingham (UoB) is the data controller for the ECHOES study. This means that we decide how to use it and are responsible for looking after it in accordance with the General Data Protection Regulation (GDPR).
For the ECHOES-Survive project, the data processor is the University of Birmingham. UoB works in partnership with the University of Oxford and the NIHR-funded Oxford Biomedical Research Centre. Access to your data within the University is restricted to the ECHOES team. We have no intention to share your data. Your data will not be used for marketing purposes e.g. profiling.
A minimum amount of identifiable data (name, date of birth, NHS number) from ECHOES participants is shared with NHS Digital by the University of Birmingham to carry out the linkage between the study data and civil registration data. NHS Digital provides date and cause of death directly to the study team. As soon as the date and cause of death is linked with the participants study information, any data that could be used to directly identify individuals (name, date of birth, NHS number, date of death) is removed. The data will be stored for the duration of the ECHOES-Survive study. Under Section 251 of the NHS Act 2006, the Health Research Authority has given approval for us to use your data without your explicit consent for medical research.
Personal and personal sensitive data are processed. The legal basis for processing under the GDPR is Article 6(1)(e) ‘task in the public interest’ and 9(2)(j) ‘research’. The data protection officer for the University of Birmingham can be contacted at firstname.lastname@example.org.
Your data are stored on our secure servers at the University of Birmingham and will not be transferred outside the EEA. Your data will be held securely in accordance with the University’s policies and procedures. Further information is available on https://www.birmingham.ac.uk/privacy/index.aspx