EVAREST Privacy Notice
EVAREST Privacy Notice
The EVAREST study has three main aims: [To examine how stress echocardiography is used in the diagnosis of heart disease, whether there are differences in how the test is performed between hospitals, and how the results of the stress echocardiogram guides patients’ care]
Participants in the study have given permission for the study investigators at the University of Oxford to access their records and to store them on a secure database linking their personal details, clinical notes and research findings. In order to keep our research records up to date throughout the duration of the study we will send identifying information including [NHS Number, Date of Birth, and Postal Code] to NHS England so they can link to and send back to the University of Oxford. We will request data from the following datasets: [Hospital Episode Statistics (HES) Critical Care, HES Outpatients, HES Admitted Patient Care, HES Emergency Care Dataset, Diagnostic Imaging Dataset, and civil registry mortality data including date and cause of death.]
This study has been reviewed and approved by the South Central – Berkshire Research Ethics Committee (14/SC/1437), who can be contacted at email@example.com. You can also lodge a complaint by contacting the study team at Email: [firstname.lastname@example.org] or the Data Protection Officer (DPO) who is part of the University’s Information Compliance Team at email@example.com. The DPO is responsible for monitoring internal compliance with GDPR, advising on the University’s data protection obligations, and acting as a point of contact for individuals and the Information Commissioners Office.
Research is a task that we perform in the public interest. The University of Oxford, as sponsor, is the data controller. This means that we, as University of Oxford researchers, are responsible for looking after your information and using it properly. We will use the minimum personally-identifiable information possible.
The legal basis for the processing and storage of personal data for EVAREST/BSE-NSTEP is that it is ‘a task in the public interest’ (article 6(1)(e)) and, that sensitive personal data is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes (article 9 (2) (j), based on Article 89(1)).
The data that we receive and analyse will be identified by a trial number only, and will not be identified by name, date of birth, NHS number or address. With the trial number, we will link to the original EVAREST/BSE-NSTEP database, and information collected during the earlier trial visits). The information received from NHS England will be imported into a database held securely by the University of Oxford and used solely for academic research purposes. Before analysing this complete dataset (including information already provided by trial participants with information from NHS England) personal identifiers will be removed. Importantly, whilst the information received is specific to each trial participant, no individual person will be identifiable in any publication arising from this work. Your personal data will not be shared with any 3rd parties and will not be used for any automated decision making or profiling. If you would like to have this data withdrawn, please contact the study team using the details given below.
What to do next?
If you decide you do not want your data to be linked in this way you can withdraw from this follow-up, without affecting your current medical care, by contacting the study team, who would require your identifiers to then inform NHS England that you no longer wish to be part of the cohort. NHS England will not provide us with data for anyone who has withdrawn consent.
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.admin.ox.ac.uk/individual-rights or by contacting the study team using the details below. The University’s data protection officer can be reached at firstname.lastname@example.org.
If you have further questions or are not happy with the way your data has been handled, please contact the study team using the contact details below. Alternatively, you can contact the study sponsor on 01865 616480 or email@example.com. You have the right to lodge a complaint with the Information Commmissioner’s Office (0303 123 1113 or www.ico.org.uk.