Imperial College London is the sponsor for this study based in the United Kingdom. We will be using information from you in order 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 Personal Information We Collect And How We Collect It
Information collected by us
In the course of the research study Imperial College London will collect the following personal information when you provide it to us either in person or online:
Contact and communication information, including:
- contact email address or phone number, whichever you list on the consent form
- records of communications and interactions we have had with you
Biographical information, including:
- your name, ethnicity, and date of birth;
We will also collect some special categories of, including information concerning:
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information about risk factors including your reproductive history, cancer history (if any), and other medical history
Our Data Retention Policy
Imperial College London will keep identifiable information about you for:
- 10 years after the study has finished in relation to data subject consent forms.
- 10 years after the study has completed in relation to primary research data.
Further information on Imperial College London’s retention periods may be found at https://www.imperial.ac.uk/media/imperial-college/administration-and-support-services/records-and-archives/public/RetentionSchedule.pdf.
A link to Imperial College London’s data protection webpage may be found at https://www.imperial.ac.uk/admin-services/legal-services-office/data-protection/ but this is the notice most applicable to the information provided by participants and therefore takes precedence for all purposes described hereunder.
Your rights and what will happen if you withdraw from the study
Your usual statutory rights to access, change or move your information are limited, because of exceptions applicable to some types of research, and also because we need to manage your information in specific, lawful 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.
Our Data Sharing Policy
When you agree to take part in a research study, the information about you collected for the purposes of the research study may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with recognised national or international good practice guidelines and in accordance with research ethics. For BECS, this means we may only share anonymised information upon request which is followed by a strict approval processes and restrictions with access to data.
Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of research, or if you provided consent, to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.
Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.
Legal Basis for processing information
As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that 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.
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
More information on legal basis on processing information can be found on Information Commissioners Office website (https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/lawful-basis-for-processing/)
Contact Data Protection Officer
If you wish to raise a complaint on how we have handled your personal data or if you want to find out more about how we use your information, please contact Imperial College London’s Data Protection Officer via email at dpo@imperial.ac.uk, via telephone on 020 7594 3502 and via post at Imperial College London, Data Protection Officer, Faculty Building Level 4, London SW7 2AZ.
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). The ICO does recommend that you seek to resolve matters with the data controller (us) first before involving the regulator