Privacy Notice

Invitations to participate in Clinical Research

Clinical research trials are conducted to increase our understanding of treatment, diagnosis and prevention of a range of diseases and health conditions. Such research is important for the wider public interest, including reducing the burden of illness, optimising health, and improving quality and longevity of life for the local and global population. Participating in clinical research trials is voluntary and entirely optional, however it is important that members of the public have the opportunity to be invited, contribute to and participate in research if they are interested in doing so.

We use various ways to contact anyone who may be interested in participating in research, including via social media, news outlets, the Electoral Roll, NHS patient databases (including through GP surgeries), schools, local businesses or other public places, or using a relevant mailing list or registry that individuals may have independently signed up to. If you are linked into, or have signed up to any of these methods or mailing lists, you may receive correspondence about clinical research studies currently recruiting participants at the Oxford Vaccine Group, University of Oxford.

Please note, we do not have your personal details unless you have specifically provided us with these. If you no longer wish to receive invitations of this kind, please follow the opt-out instructions on the invitation material you have received (these may include the National Data opt-out and Oxford Vaccine Group, University of Oxford Sponsored Studies opt-out; note the opt-out instructions may differ depending on the method by which you were contacted). The Oxford Vaccine Group can be contacted at any time if there are any further questions or feedback on the way individuals are approached and invited to research. Contact details can be found here.

If you have received a research invitation letter, this may have been arranged through NHS England. In this context, NHS England has been requested by the Oxford Vaccine Group to run an electronic search to identify potential participants who may be eligible to be invited to participate. The Oxford Vaccine Group have no access to this data, and instead NHS England will arrange for this invitation to be sent out on our behalf by an external mailing company to preserve the confidentiality of potential participants. The Health Research Authority, on advice from the Confidentiality Advisory Group, has provided the legal permission for the Oxford Vaccine Group, University of Oxford (as Data Controller) to use your data under section 251 of the National Health Service Act 2006 – this includes permission for NHS England to identify and invite you on behalf of the study team. The Confidentiality Advisory Group, is an independent body which provides expert advice on the use of confidential patient information in England and Wales.

If you provide your personal details to the Oxford Vaccine Group for the purposes of research, please find a summary of how we will handle and protect your data, as outlined below.

If you would like to remove your details from our mailing lists/registries at any time, please complete the opt-out list form provided in the link: http://trials.ovg.ox.ac.uk/trials/opt-out/

Data protection

If in the course of responding to an invitation to participate in clinical research, you provide information about yourself (‘personal data’). Data protection regulation requires that we state the legal basis for processing information about you. In the case of research, this is ‘a task in the public interest.’ We, the University of Oxford (Oxford Vaccine Group), are the ‘data controller’ for this information, which means we decide how to use it and are responsible for looking after it in accordance with the General Data Protection Regulation and associated data protection legislation.

How we will use your data

We will use your data in accordance with the consent you have provided. Either you have given us your consent to do so by responding to an invitation or completing a registration or expression of interest form, or you have provided full written consent as you are actively taking part in a trial. We will only use your data for the purposes for which we have collected it. This may include, but is not limited to, registering yourself on a research volunteers mailing list, participating in a research study (including being contacted to assess your eligibility and interest in participating), and sharing results and research trial updates, among others.

You can withdraw your consent at any time by contacting us via email at info@ovg.ox.ac.uk  or via telephone on (01865) 611400. In this event, we will stop the processing as soon as we can. However, this will not affect the lawfulness of any data processing carried out before your withdrawal of consent.

We will only use your data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another related reason and that reason is compatible with the original purpose. If we need to use your data for an unrelated purpose, we will seek your consent to use it for that new purpose.

Who has access to your data?

Access to your data within the University of Oxford will be provided to those who need to view it as part of their work in carrying out the purposes described.

We may share your data with companies who provide services to us, such as mailing out invitational material, and/or for safety, monitoring and regulatory oversight of the clinical research trials we conduct. These companies  are required to take appropriate security measures to protect your data in line with our policies. We do not allow them to use your data for their own purposes. We permit them to process your data only for specified purposes and in accordance with our instructions.

Where we share your data with a third party, we will seek to share the minimum amount necessary.

It is possible that in the future, we may share minimally identifiable data with other academic or commercial organisations we collaborate with to carry out further related research (where this is in the public interest or necessary for the purposes of another organisation’s legitimate research interests). We will always make sure that any such sharing for further research is done in compliance with data protection laws, and under terms that protect your privacy and the confidentiality of your data.

Retaining your data

We will only retain your data for as long as we need it to meet our purposes, including any relating to legal, accounting, or reporting requirements.

If we collected your personal information directly from you, you have already been told about the long-term use (and, where applicable, re-use) and retention of your personal data in connection with the specific research study or project you are participating in.

Security

Your data will be held securely in accordance with the University’s policies and procedures. Further information is available on the University’s Data Management website here: University of Oxford research data policy | Research Data Oxford

Where we store and use your data

We store and use your data on University of Oxford premises, in both a manual and electronic form where necessary.

Electronic data may be transferred to, and stored at, a destination outside the European Economic Area ("EEA"), in accordance with the law. For example, this may happen where we use IT systems which are hosted outside the EEA. We will make sure that identifiable data is removed whenever possible and that any data transfer is done securely.

Such transfers will only take place if one of the following applies:

• the country receiving the data is considered by the EU to provide an adequate level of data protection;
• the organisation receiving the data is covered by an arrangement recognised by the EU as providing an adequate standard of data protection e.g. transfers to companies that are certified under the EU US Privacy Shield;
• the transfer is governed by approved contractual clauses;
• the transfer has your consent;
• the transfer is necessary for the performance of a contract with you or to take steps requested by you prior to entering into that contract; or
• the transfer is necessary for the performance of a contract with another person, which is in your interests.

Your 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 is available at https://compliance.admin.ox.ac.uk/individual-rights or by contacting the study team using the details below.

Contact

If you wish to raise any queries or concerns about our use of your data, please contact us via email at  info@ovg.ox.ac.uk or via the post at our mailing address; Oxford Vaccine Group, Centre for Clinical Vaccinology and Tropical Medicine (CCVTM), Churchill Hospital, Old Road, Headington, Oxford, United Kingdom, OX3 7LE. Alternatively, you can contact the Oxford University research sponsor, the Research Governance, Ethics and Assurance Team (RGEA), on 01865 616480 or rgea.sponsor@admin.ox.ac.uk. You also have the right to raise any concerns, or lodge a complaint with the Information Commissioner’s Office on 0303 123 1113 or online at www.ico.org.uk.