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TIA-Survive Study Privacy Notice

This privacy policy describes how we collect and use your personal data during your participation in the TIA cohort study in accordance with the General Data Protection Regulation (GDPR).

GLOSSARY

Where we refer in this policy to your ‘personal data’, we mean any recorded information that is about you and from which you can be identified.  

Where we refer to the ‘processing’ of your personal data, we mean anything that we do with that information, including collection, use, storage, disclosure or retention.

THE TYPES OF DATA WE HOLD ABOUT YOU AND HOW WE OBTAINED IT

Personal data including name, age, sex, date of birth and NHS Number were collected by the TIA cohort study, carried out in the 1980s as part of the Oxford Community Stroke Project (OCSP) and an Oxford cohort study of hospital referred patients with TIA. The OCSP was a population-based study of the incidence of first ever TIA in a population of 105,000 people in Oxfordshire, UK, that ran from 1981 to 1986. The hospital referred cohort was recruited during the same period from patients referred from the remaining population of Oxfordshire that was not covered by the OCSP and included both first ever and recurrent TIA. Transient ischaemic attack, or TIA, occurs when there is interruption to the blood supply to the brain. Patients can have slurred speech, weakness on one side and problems with vision but symptoms resolve fully within 24 hours. The long-term outcome for patients following a TIA is not fully understood.

WHO IS USING YOUR PERSONAL DATA

The University of Oxford is the data controller for the information that we obtained from you and others as part of the TIA Cohort Study. This means that we decide how to use it and are responsible for looking after it in accordance with the GDPR.

Access to your data within the University is restricted to the TIA cohort team, led by Professor Richard Hobbs and Dr Clare Taylor, now based at the Nuffield Department of Primary Care Health Sciences at the University of Oxford. The team are currently working on TIA-Survive, a study exploring the long-term outcomes of the original study participants.

We have no intention to share your data. Your data will not be used for marketing purposes e.g. profiling.

HOW THE UNIVERSITY USES YOR DATA

TIA-Survive links the information provided by participants at study visits with NHS Digital and civil registration data to report the survival rates, and cause of death, for the whole cohort. This work will determine how long people live for following a diagnosis of TIA, and whether they die from stroke-related problems or something else, to help doctors and patients understand more about the condition.

The data processor is also the University of Oxford. A minimum amount of identifiable data (name, date of birth, NHS number) is shared with NHS Digital by the University of Oxford to carry out the linkage between the study data and civil registration data. NHS Digital provide date and cause of death directly to the study team. Data supplied are pseudonymised, a process by which information within a data record that may identify an individual is replaced by an artificial identifier which means the individuals are no longer identifiable.  The TIA-Survive dataset held by University of Oxford is also pseudonymised and does not contain any personal data.

The legal basis for processing under the General Data Protection Regulation (GDPR) will be Articles 6(1)(e) ‘task in the public interest’ and 9(2)(j) ‘research’.

The University of Oxford Policy on Data Protection can be accessed via the following link https://www.admin.ox.ac.uk/councilsec/compliance/gdpr/universitypolicyondataprotection. The data protection officer for the University can be contacted at dataprotection@admin.ox.ac.uk

TRANSFER OF YOUR DATA OUTSIDE OF THE EUROPEAN ECONOMIC AREA (EEA)  

Your data are stored on our secure servers at the University of Oxford and will not be transferred outside the EEA.

RETENTION PERIOD

The data will be stored for the duration of the TIA-Survive study. The current end date for the study is 31st October 2020.

SECURITY

Your data will be held securely in accordance with the University’s policies and procedures. Further information is available on the University’s Information Security website: https://www.infosec.ox.ac.uk

YOUR RIGHTS

If you are a TIA cohort participant, you are free to withdraw your consent for data linkage with NHS Digital at any time. Please contact the study team at clare.taylor@phc.ox.ac.uk or andrea.roalfe@phc.ox.ac.uk , call 01865 289300 or write to us at TIA cohort team, Nuffield Department of Primary Care Health Sciences, Radcliffe Primary Care Building, Woodstock Road, Oxford, OX2 6GG.

All participants in the TIA cohort study have the right to:

  • Ask us for copies of your personal information
  • Ask us to correct any information you think is inaccurate or ask us to complete information you think is incomplete
  • Ask us to erase your personal information
  • Ask us to restrict the processing of your information or object to processing of your information
  • Ask us to transfer the information you gave us from one organisation to another, or give it to you.

 

 

   The full details of the privacy policy, including how to make a complaint, can be found at: http://www.ox.ac.uk/privacy-policy

 

CONTACT

If you wish to raise any queries or concerns about this privacy notice please contact the study team at clare.taylor@phc.ox.ac.uk or andrea.roalfe@phc.ox.ac.uk, or write to TIA cohort team, Nuffield Department of Primary Care Health Sciences, Radcliffe Primary Care Building, Woodstock Road, Oxford, OX2 6GG.