Who is responsible for your data?
The data controller for the Oxford BioBank is the University of Oxford, (our sponsoring organisation) exact details are in the Participant Information Sheet or the Supplementary Information Sheet.
Personal data we collect about you and its confidentiality
Research Staff within the University will collect information from you for the Oxford BioBank. Personal data, for example name, address, NHS number, and date of birth, will be obtained by direct interview with you individually. Contact details, health questionnaire information, anthropometric measurements and biochemistry results are stored in a relational database on a secure network, with limited access by the Oxford BioBank team only. All individual data will have pseudonymised IDs with linked data held within a secure server. The Oxford BioBank staff will use the information that you provide us with to contact you to make an appointment for the BioBank visit.
Responsible members of the University of Oxford, regulatory authorities, and the relevant NHS Trust(s), may be given access to data for monitoring and/or audit of the research tissue bank to ensure that the research is complying with applicable regulations.
Only staff in the Oxford BioBank team who have access to information that identifies you will be involved in the process of contacting you to carry out the study visit, to send you a copy of the results, to process and analyse the information or samples, or auditing of the data collection.
Any paper notes collected about you will be stored in a locked filing cabinet, which is within a room, that can only be accessed with a swipe card.
How we protect your data
We will protect your personal data against unauthorised access, unlawful use, accidental loss, corruption, or destruction. We use technical measures such as encryption and password protection to protect your data and the systems they are held in. We also use operational measures to protect the data, for example by limiting the number of people who have access to the databases in which your data is held. We keep these security measures under review and refer to University Security Policies to keep up to date with current best practice.
How we use your personal data
The Oxford BioBank is a research tissue bank based in the Clinical Research Unit in OCDEM under the University of Oxford. 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.’ The University of Oxford is the sponsor for this research tissue bank. It is the data controller, and is responsible for looking after your information and using it properly.
We will be using information from you in order to undertake the remit of the Oxford Biobank and will use the minimum personally-identifiable information possible.
Your personal data, which is collected and managed by the Oxford BioBank may be used by us to recall you to a research study under the umbrella of the Oxford BioBank, or for a collaborator with the Oxford BioBank who have their own ethical approval to recruit from the Oxford BioBank. If this were the case you would be contacted by the recruitment nurse from the Oxford BioBank to ask if you would be interested in taking part.
You can find out more about how we use your information by contacting email@example.com
Sharing your data
Your personal data will not be shared with anyone else without your explicit consent, and only then under very specific circumstances, such as a research study with their own ethical approval requesting your contact details to arrange a visit to another facility. In this case we would always contact you first to ask your permission to share your contact details. We would also use your contact details to send you blood results or other results that might be study specific, or to send you an Oxford BioBank newsletter, or any papers that are published about research studies that you have taken part. In all other circumstances your data or samples will only be shared using a unique pseudonymised ID number.
How long we keep your data
If you agree to your details being held and to be contacted regarding future research, we will retain a copy of your consent form securely until such time as your details are removed from our database and remaining samples destroyed.
We will keep identifiable information about you, for example your name and contact details, which we need to retain to contact you about future studies, for up to 3 years after the research tissue bank comes to an end.
If you agree to your samples being used in future research, we will store your remaining samples, plus any research documents associated with your samples that may contain personal information, such as consent forms, securely at the University of Oxford for up to 3 years after research tissue bank comes to an end.
Beyond this 3-year period, data collected on you, or generated from your samples or research thereon, will be stored securely in an anonymised form only, and will be kept indefinitely for future approved research.
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.web.ox.ac.uk/individual-rights
Any participant who has given written informed consent may withdraw from the Oxford BioBank at any time without reason. You may withdraw completely, including blood and fat samples collected during the research along with all personal data, or you may withdraw your personal data, but allow samples already collected, to remain in the bank. To safeguard your rights, we will use the minimum personally-identifiable information possible.
What if there is a problem / complaint?
If you have a concern about any aspect this research tissue bank, please speak with the Oxford Biobank team using the details below. They will do their best to answer your questions.
The University of Oxford, as Sponsor, has appropriate insurance in place in the unlikely event that you suffer any harm as a direct consequence of your participation in the Oxford Biobank. NHS indemnity operates in respect of the clinical treatment provided.
If you wish to complain about any aspect of the way in which you have been approached or treated, or how your information is handled during the course of your involvement with the Oxford Biobank, contact our Data Protection Officer - firstname.lastname@example.org or you may contact University of Oxford Research Governance, Ethics & Assurance (RGEA) on 01865 616480, or the director of RGEA at email@example.com. You have the right to lodge a complaint with the Information Commissioner’s Office (0303 123 1113) or http://www.ico.org.uk.
Who has reviewed the Oxford Biobank research tissue bank?
All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect participants’ interests. This research tissue bank has been reviewed and given a favorable opinion by South Central Oxford C Research Ethics Committee.
If you would like to contact us directly for more information about how we process and protect data collected for research, please email: firstname.lastname@example.org or speak to a member of our research nurse team on 01865 857284.