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
Research Staff within the University, will collect information from you for the research study that you have agreed to take part in, in accordance with your instructions. Personal data will be obtained by direct interview with each subject. Contact details, Questionnaire, Anthropometric and Biochemistry are stored in a relational database on a secure network. All individual data will have anonymised IDs with link 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.
Individuals from the Sponsoring Organisation and regulatory organisations may look at your research records to check the accuracy of the research data. 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, sending you a copy of the results, process and analyse the information or samples, or auditing the data collection process.
How we use your personal data
The Oxford BioBank teamwork in the Clinical Research Unit in OCDEM under the University and use personally-identifiable information to conduct research. When you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study.
How long we keep your data
The Oxford BioBank will keep identifiable information about you for at least 25 years after the study has finished
How we protect your data
We 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. Read the University’s data protection policy.
Sharing your data
Your personal data which is collected and managed by the Oxford BioBank will not be shared with anyone else, and you will only be identified by a unique study ID number. Personal data may also be used by us to recall you to another ethically approved study under the umbrella of the Oxford BioBank, or by a collaborator with the Oxford BioBank who has their own ethical approval to recruit from the Oxford BioBank. If this was the case you would be contacted by the recruitment nurse for the Oxford BioBank to ask if you would be interested in taking part in another study and for your contact details to be passed to the researchers. We would also use your contact details to send you blood results or other results that might be study specific, or to send you the bi-annual Oxford BioBank newsletter, or any papers that are published about research studies that you have taken part in. At the end of the trial, anonymised data (from which you cannot be identified) may be shared with other research groups who are doing similar research. This information will not identify you and will not be combined with other information in a way that could identify you.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer, firstname.lastname@example.org, who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
If you would like to contact us directly for more information about how we process and protect data collected for research, please email: email@example.com
Friday 24th August 2018