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
Loyalty card details from either or both participating high street retailers, including:
- the name on your loyalty card
- the loyalty card number
Proof of your identity for ID verification in jpeg or pdf formats(for women who participate through the CLOCS website)
- one photo ID (e.g. drivers licence, passport)
- one utility bill (e.g. council tax bill, gas/electricity bill)
We will also collect some special categories of, including information concerning:
- information about risk factors including your reproductive history, cancer history (if any), other medical history, the number of people in your household, your perceived risk of ovarian cancer, and where you heard about this study
- your loyalty card use
Information collected from other sources
Information collected from high street retailers
If you are a participant, this means you have consented for us to request your data on your behalf. As an outcome high street retailers named on the consent form will recall data from your existing records for this research study in accordance with our instructions outlined in our data sharing agreements and in line with the retailers’ data protection policies. Your past purchase history data is regarded as a special category of information.
Information (data) from the retailers will include the following
- Individual purchases by date, category and store postcode
Your unique study ID The CLOCS team will use your name, contact details (if you choose to provide them), and loyalty card details to contact you about the research study, and make sure that relevant information about the study is recorded, and to oversee the quality of the study. Individuals from Imperial College London and regulatory organisations may look at your research records to check the accuracy of the research study.
If you have provided consent for Imperial College London researchers to request your loyalty card data on your behalf, Imperial College London will collect information about you for CLOCS from high street retailers with loyalty cards. High street retailers will pass the information collected from your loyalty card records to Imperial College London. This information will include your past purchase history, including data about the items you purchased, when and where you purchased them.
The only people in Imperial College London who will have access to information that identifies you will be people who need to contact you to verify loyalty card details or audit the data collection process. Only the research team will have access to the consent forms which will be kept in a secure locker and secure computer server.
Data Validation procedures
Individuals from Imperial College London and regulatory organisations may look at your medical (if provided) and research records to check the accuracy of the research study.
We will use the combined information provided by the high street retailers and the information collected from your NHS trust to investigate whether or not your everyday loyalty card use in high street retailers can help identify early signs of ovarian cancer.
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.
Past purchase data will be kept pseudonymised until results are published or five years from the date of participation in the study, whichever comes first. Then, this data will be anonymised and any link to identifiable data will be deleted.
For women who participate in CLOCS on the website and provide a copy of their photo identification and a copy of a utility bill, we will obtain them as an image or in pdf format. These will be collected only for the purposes of ensuring matching the identities of the participants in line with high street retailer’s data portability policies for sharing data with third party organisations. These documents will be deleted as soon as a member of the CLOCS team verifies ID matches with the details provided in the consent form and will not be retained beyond this process.
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 CLOCS, this means we can only share anonymised information collected by us (i.e, self-reported questionnaire data, clinical questionnaire and derived data) upon request which is followed by a strict approval processes and restrictions with access to data. We will not be sharing any commercial data, i.e. past purchase data from loyalty cards with anyone which will be restricted in our data processing agreements.
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 email@example.com, 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
Last Updated 10/09/2020