Oxford Vascular Study

01865 231601 (fax 01865 234629)

CPSD

The Oxford Vascular Study (OxVasc) investigates vascular diseases (e.g. strokes, heart attacks) in patients registered with eight general practices in Oxfordshire. We run a rapid-access clinic for patients with suspected Transient Ischaemic Attacks (TIAs) or minor strokes. All OxVasc clinics held in the Wolfson Centre for the Prevention of Stroke and Dementia follow Oxford University Hospitals NHS Foundation Trust infection control guidelines.

What is the purpose of the study?

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 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 April 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, arrange investigations and initiate treatment if necessary. Information is gathered as part of this clinical service in order to help answer our research questions. For patients who have had a stroke requiring admission to hospital, a member of our team visits 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 300 academic papers with results from our research. Some of these findings have already changed how people are assessed and treated after a TIA or stroke, both in the UK and around the world.

Our research questions

The information we gather when we see patients is used both for optimising treatment and care, and to answer our research questions:

How many people are having a stroke? Is the number rising or falling with time and why?
Can we prevent patients from having a stroke with existing preventative strategies?
Are there any biomarkers or genes that would identify people at greater risk of stroke or vascular cognitive impairment?

GP Practices working with oxvasc

19 Beaumont Street, Oxford
Bartlemas Surgery, East Oxford Health Centre
KEY Medical Practice, Kidlington and Yarnton
The Malthouse Surgery, Abingdon
Marcham Road Family Health Centre, Abingdon
The Abingdon Surgery, 65 Stert St, Abingdon
Berinsfield Health Centre, Berinsfield
Church St Practice, Wantage

Stroke and heart disease research needs you!

Could you spare an hour to help our research?

Find out more

Information for Patients

Clinic Locations and Directions

Investigations

What we do with your information

How is my personal information collected and used?

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 use personal information collected to allow us to follow-up participants for up to 10-years following enrolment into OxVasc by either face-face assessments or telephone interviews with the study team.

We are very keen to find out what happens to everyone enrolled in the study over a long period of time. 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, if applicable.

What is the purpose of the data processed for OxVasc?

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 detailed information on all health outcomes for analysis.

What information does data linkage with NHS health records provide?

Important information on NHS healthcare services, health outcomes and cause of death
Data linkage of OxVasc participants with complete health data essential for this type of population-based study

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

If you enrolled into OxVasc prior to June 2020:

If you are an OxVasc participant who consented to take part in the study before June 2020 we did not include specific wording in the consent documents to explain how we link data collected from study participants with information held in NHS Digital central health datasets. This data linkage is now done with ‘section 251’ support through the appropriate ethical committees as the legal basis under common law.

We have enrolled a large number of OxVasc participants and so it is not feasible to ask everyone for their permission again. However, if you enrolled prior to June 2020 you may decide to ‘opt out’ of this data linkage by contacting the study team. This would not affect your participation in OxVasc for follow-up in clinic, at home or by telephone.

If you agree to data linkage with your health records you do not have to do anything and it will go ahead as described above.

Everyone who has consented to take part in OxVasc after June 2020 will have also received the OxVasc Privacy Notice which provides participants with information regarding the data linkage with centrally held NHS health records.

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 electronic 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 will 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 to 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 31 March 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 the 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 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 by email 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 opt out of NHS data sharing.

Examples of OxVasc Research

TIAs and Minor Strokes: Medical Emergencies

OxVasc took a different approach to the assessment and management of patients who had suffered a TIA or minor stroke. Historically, these events had been investigated with an appointment-based clinic assessment, and then treatment was initiated by the patient's GP. In the 'EXPRESS' study, we showed that by treating these events as medical emergencies, seeing patients rapidly, and initiating treatments urgently, 80% of early recurrent strokes could be prevented. In real terms, we showed that by employing the OxVasc strategy, 10,000 strokes per year could be prevented in the UK, saving the NHS £200 million per year in costs.

This work led directly to:

A reduction in the recommended time allowed to assess and investigate patients with TIA and minor stroke from four weeks to 24 hours in UK guidelines.
Department of Health strategy mandating NHS trusts to provide a daily TIA clinical service modelled on that established by OxVasc.

Major international guidelines have also endorsed the findings of OxVasc.

The ABCD2 Score

The ABCD² was derived from data collected as part of the Oxford Vascular Study. It is a simple clinical tool based on easily assessable risk factors, which is of use for calculating an individual's early risk (up to 90 days) of stroke after they have suffered a TIA, and can therefore guide appropriate management. Use of the ABCD² score is recommended in NICE guidelines for TIA and stroke.

Blood Pressure Variability

OxVasc has shown how the variation in patient blood pressure, independent of average blood pressure, is a predictor for risk of vascular events; greater variation confers greater risk. Given this finding, we investigated the effects of different classes of blood pressure medication upon variability, discovering that certain classes are better at controlling blood pressure variation.

Current clinical guidelines are being revised and should take these findings into account. The UK stroke association has said “this work will have a huge impact on the future prevention of strokes”, and the accompanying commentary to our Lancet papers said “Rothwell and colleagues are to be congratulated on bringing forth compelling findings that set the foundation for major change in our practice of blood pressure treatment for the prevention of stroke and other cardiovascular diseases.”