Oxford Vascular Study

Purpose, follow-up and Privacy Notice 

What is the purpose of the OxVasc study?

The purpose of the Oxford Vascular Study is to find out how common vascular events (e.g. heart attacks, strokes, transient ischaemic attacks (TIA) and other circulatory problems) is in Oxfordshire, and how it affects people’s lives. The study is unique in the world in studying all these types of vascular disease at the same time and in the same population. Our aim is to improve understanding of these conditions, and how to better treat patients.

We have been recruiting patients with vascular diseases to OxVasc since 2002. The GP practices we work with refer patients suspected of suffering a TIA or minor stroke to our rapid-access clinic, where a specialist doctor will clinically assess the patient, and a range of investigations may be performed. Treatments, if necessary, will be initiated. Information is gathered as part of this clinical service in order to help answer our research questions. For patients who have had larger strokes and other vascular events necessitating admission to hospital, a member of our team will visit them to discuss joining the study.

After an initial assessment, we see patients at various stages up to 10 years after their event, to see how they are recovering, and to ensure they are on appropriate treatment for prevention of future strokes. By collecting information from patients over a long period of time, we can track how the need for healthcare is changing, both for individuals and the population as a whole. See below to find out what we do with the information we collect about you. So far we have published over 200 academic papers with results of our research. Our findings have already changed how people are assessed and treated after a TIA or stroke, both in the UK and around the world.

WHAT WE DO WITH YOUR INFORMATION

How is my personal information collected?

We take our responsibility for looking after information very seriously; confidentiality underpins our study method and we take every step to keep all data confidential in line with legal rules and practice.

The University of Oxford has deemed our research into the health outcomes for people who have suffered from stroke or other vascular events to be a task in the public interest under Article 6 (1) (e) General Data Protection Regulation (UK-GDPR). We follow-up participants for up to 10-years following enrolment into OxVasc either with face-face or telephone interviews with the study team. Also as we are very keen to find out what happens to all of the study participants, if you have given us your consent to follow up your health status using information held by the NHS and maintained by the General Register, we will register all participants in the Oxford Vascular study with NHS Digital. We provide identifiable data (name, date of birth and NHS number) to NHS Digital. NHS Digital can then provide us with date of birth, sex, postcode, and NHS number together with participant’s unique OxVasc study identifier and cause and date of death. In addition, NHS Digital has a record of all hospital admissions from the Hospital Episode Statistics (HES) dataset and which they can link to individual participants in the study. This allows us to find out if study participants have been admitted to hospital or passed away, without us contacting the family and causing undue distress to relatives. For more information visit https://digital.nhs.uk

What is the purpose of the data processed for OxVasc?

The purpose of the Oxford Vascular Study is to find out how common vascular disease (e.g. heart attacks, strokes, transient ischaemic attacks (TIA) and other circulatory problems) is in Oxfordshire and help our understanding of these conditions and how to best treat them. Therefore comprehensive follow-up to acquire and process high quality information (data) received from OxVasc participants is important and data linkage with NHS Digital will ensure complete, high quality data on outcome for analysis.

Is the Information collected by OxVasc secure?

All paper records collated as part of the study are stored in the Wolfson Centre for the Prevention of Stroke and Dementia.

The information we received from NHS Digital will be imported to a securely accessed folder by The University of Oxford (Data Controller), and used solely for academic research purposes by the OxVasc study team. Researchers at Oxford University will remain responsible for the security and validity of the information held and only named members of OxVasc study team will have access to the data collected. Before analysing this data (including information already provided by the study participants), personal identifiers would be removed. Importantly, whilst the information received is specific to each study participant, no individual person will be identifiable in any publication arising from this work.

Sharing the data?

Any personal data that identifies you are collected and managed by the OxVasc team and will not be shared with anyone else, except to obtain health information about you from NHS Digital (see section above). Data obtained from NHS Digital will not be shared with organisations outside of the University of Oxford and only named researchers in the Nuffield Department of Clinical Neurosciences, University of Oxford will have access to these data.

Fully anonymised data collected as part of the study may be shared with other organisations outside the University of Oxford for research to improve healthcare delivery (not NHS data) and subject appropriate agreements being in place and approval by the Principal Investigator - Professor Peter Rothwell.

How long will my data be held by OxVasc?

The University of Oxford will hold the minimal personal, identifiable data about you (first and last name, date of birth, NHS number) for up to 10 years after the study has finished as described in the OxVasc participant information sheet. This excludes any research documents with personal information, such as consent forms, which will be held securely at the University of Oxford for 25 years after the end of the study (date of last publication) following which annual reviews of data retention will be undertaken. Research data resulting from the study does not contain any personal data that could identify you.

The current end date for recruitment to OxVasc is March 31st 2022 but the study will extend beyond this date if further funding is secured

Who is responsible for the OxVasc data?

The ‘data controller’ is the University of Oxford and as such is responsible for processing and looking after all OxVasc data for research purposes. The University of Oxford will only process personal data as necessary to undertake research that is being carried out in the public interest.

The information supplied by NHS Digital is sourced from civil registration data and the study is processing personal data under UK-GDPR Articles 6(1)(e) and special category (sensitive) personal data related to health under Article 9(2)(j). NHS Digital also follows a strict assurance system to make sure that your information is looked after in line with good practice and the law. Your data will not be used for automated decision-making.

What are my data rights?

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 under the General Data Protection Regulation is available on the University of Oxford's Compliance webpage. 

If you would like to contact us directly for more information about how we process and protect data collected for research, please email OxVasc Study team at: orh-tr.oxvasc@nhs.net

or call +44 (0) 1865 231601 or you can write to:

Wolfson Centre for Prevention of Stroke and Dementia,

Wolfson Building,

John Radcliffe,

Oxford, OX3 9DU.

If you are dissatisfied with the way we have used your information and wish to raise a complaint, please contact the OxVasc study team at the contact details above or alternatively contact the University’s Data Protection Officer at email: data.protection@admin.ox.ac.uk or telephone +44 (0) 1865 270285, who will investigate the matter.

We will seek to deal with your request without undue delay, and in any event in accordance with the requirements of the UK-GDPR. Please note that we may keep a record of your communications to help us resolve any issues which you raise.

If you are not satisfied with our response or believe we are processing your data in a way that is not lawful you can also complain to the Information Commissioner’s Office at https://ico.org.uk/make-a-complaint/ or call their helpline on 0303 123 1113.

What if I want to withdraw from the study?

If you decide you no longer want your study data to be linked in this way you can withdraw from this follow-up, without affecting your current medical care in any way, by contacting Dr Louise Silver at: louise.silver@ndcn.ox.ac.uk or call +44 (0) 1865 231601 (between 9-4pm on weekdays) or you can write to:

OxVasc, Wolfson Centre for Prevention of Stroke and Dementia,

Wolfson Building,

John Radcliffe,

Oxford, OX3 9DU.

Your rights to access, change or move your data are limited as the University of Oxford needs to manage your information in specific ways in. order for the research to be reliable and accurate. You have the right to access any personal data that is held about you by the OxVasc team and the right to ask us to correct any inaccurate personal data we hold about you. You have the right to restrict or object to processing of your personal data.

However, if you decide that you do not want any more information collected about you by OxVasc, the University of Oxford may be obliged by law to keep information already collected to ensure consistency and reproducibility of the study results. Rights to receive an electronic copy of the personal data held about you are also limited.

You may also op-out of NHS data sharing. More information on this can be found at https://digital.nhs.uk/services/national-data-opt-out