MRC Epidemiology Unit
DEBEAT Study – Privacy notice
The information published here applies to using your information as part of the DEBEAT Pilot Study coordinated by the University of Cambridge. This study is run by a research team based at the MRC Epidemiology Unit, School of Clinical Medicine, University of Cambridge.
The University of Cambridge sponsors this UK-based study. We will be using information from you to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Cambridge will keep identifiable information about you for 20 years after the study has finished.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways 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. You can find out more about how we use your information at https://www.medschl.cam.ac.uk/research/privacy-noticehow-we-use-your-research-data/.
1. Who will process my personal information?
The University of Cambridge is the data controller of any data that is collected as part of the DEBEAT study by the research team in Cambridge.
Further information about the University’s data protection policy and about how the University uses your personal data as a research participant can be found at:
https://www.information-compliance.admin.cam.ac.uk/data-protection/research-participant-data
This study is part of the University of Cambridge, and as such, the legal basis to hold and use personal data is covered under the General Data Protection Regulation “Article 6(1) (e) processing is necessary for the performance of a task carried out in the public interest”. To hold special categories of personal data, our lawful basis is for pursuing scientific research under “Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.”.
2. What information do we collect?
The research team will have collected your contact details when you first registered your interest in taking part. Information about you was also collected via online data capture at several time points throughout the study. This included information about your activity levels, diet and body measurements.
We will collect health information about you, including your most recent weight, and your eating, drinking and smoking habits. We collect demographic data like your age, gender, ethnicity, employment, educational level (for your family, also) and approximate total gross household annual income.
3. How we use the information we collect
We will collect personal (identifiable) information about you so we can send you study questionnaires and reminders, let you know what the next steps are in the DEBEAT study and offer you the chance to either stop taking part or carry on helping us with our research.
As described above, the data we collect from your questionnaire answers is pseudonymised (in other words, de-personalised, i.e. coded with a unique ID number, with the key to those ID numbers stored separately and securely).
Collecting this data is necessary for the research we carry out in the public interest. We do not perform automated decision-making, including profiling.
4. Sharing your information
We always aim to limit the amount of information provided outside of the research team to the minimum needed to confirm we’ve got the right record for you. This includes your name, date of birth, and postcode.
As part of this study, you will be signed up to REDCap and Intake24 – software that will facilitate the questionnaires we ask you to complete. So that both of these programmes can provide you with the study questionnaires, we will need to share some of your information with each provider.
5. Keeping your data confidential and safe
Any personal data we hold is kept securely in a haven that is part of the School of Clinical Medicine at the MRC Epidemiology Unit, University of Cambridge. Personal data is on a secure research server within separate study databases within the haven. Access to the server and databases is controlled by using unique usernames and passwords, which are not used to access other Unit systems. Access to the secure research server is further protected by two-factor authentication. All databases are encrypted. Physical access to the IT infrastructure and study offices are controlled by building card access, and internal rooms where confidential paper information is stored are locked when not in use.
When sharing any identifiable data, a secure file transfer protocol (SFTP) is used with encryption, and data-sharing agreements are in place to limit the use of your data further.
All other data collected about you (such as answers to questionnaires) is coded with a unique identification number that is held separately from any identifiable data we hold.
How to contact us
If you have any questions about the study, the information we hold about you or if you would like to opt-out of the study (which you can do so without providing a reason and without your medical care being affected), please contact us:
DEBEAT Team
Email: DEBEAT.Study@mrc-epid.cam.ac.uk
Address: DEBEAT Study, MRC Epidemiology Unit, University of Cambridge School of Clinical Medicine, Box 285 Institute of Metabolic Science, Cambridge Biomedical Campus, Cambridge CB2 0QQ
Telephone: +44 (0) 1223 769211
University of Cambridge Data Protection Officer
Email: data.protection@admin.cam.ac.uk
Address: Information Compliance Office, Registrary’s Office, University of Cambridge, The Old Schools, Trinity Lane, Cambridge CB2 1TN
Telephone: +44 (0) 1223 764142