There has been a mutual trust and an unwritten contract between researchers and volunteering participants. People supporting research aims are usually happy to take part in surveys, interviews and clinical trials to improve health outcomes in the future. In return, researchers always aim to ensure that your information is kept secure, confidential, and accurate.
It is unusual for academic researchers to request some kind proof of identification from their participants, and this is why we felt we need to explain why Cancer Loyalty Card Study (CLOCS) needs a proof of ID and a proof of address document.
First research to look at shopping history to understand ovarian cancer symptoms
To our knowledge, CLOCS is the first research project in the world using past purchase information to benefit individual's health outcomes with an individual consent. Thus, the essential part of CLOCS is based on building trust and acceptability to achieve its goals. Plus, we need to be extra cautious to ensure we are doing everything right by our participants.
CLOCS aims to compare past purchase information of ovarian cancer patients and volunteers without ovarian cancer to understand how symptoms are managed before diagnosis. When a person volunteers to take part in CLOCS, they need to give additional consent for us to request their past purchase information from the retailers supporting this study. We are then able to request past purchase information on your behalf from the supporting retailers. Your past purchase information collected by the retailers’ loyalty cards is considered sensitive information and should be stored with very strong safeguards.
The retailers supporting CLOCS require an ID verification so that they do not send us someone else's purchase history.
Before the Data Protection Act (2018) and the General Data Protection Regulation, individuals had little access to what information was being held about them by the retailers. Since March 2018, you can request this as part of your Subject Access Request or Data Portability right. For instance, if you want to request what information the retailers hold from you, it is very likely that you also need to provide a proof of ID and a proof of address. The retailers that are supporting CLOCS also require an ID verification.
With guidance from the retailers supporting our study, our volunteering ovarian cancer patients are being verified at the NHS trusts, and the healthy volunteers participating through the CLOCS website (www.clocsproject.org.uk) are being verified through submission of additional documents using a proof of ID and a proof of address. In July 2020, the NHS Research Ethics Committee (19/NW/0427) reviewed our request to verify our participants and approved this to be implemented as part of CLOCS website. We only use ID verification to verify your information, and once we receive the purchase history from the retailers all these of documents are immediately deleted. Please see our Participant Information Sheet for detailed information.
Still not convinced???
Here are a few scenarios where the ID verification (a proof of ID and a proof of address) would ensure that you have not spent time to complete the CLOCS survey just to be deleted:
-
Two people could have the same name but different loyalty card numbers
We can assess if they are different people by looking at the ID verification documents.
-
Same contact details (e.g. email and phone) with another participant but the consent and the name on the loyalty card are different.
Two people from the same household with one personal email address would still be eligible to take part as long as they have different loyalty card numbers.
-
Two people could have the same name but one provides the loyalty card number for the retailer one, and the other participant provides the loyalty card number for retailer two.
ID verification would be the best way to ensure that they are not the same people without re-contacting both participants to request the same information.
-
Same person could have multiple submissions.
We cannot delete duplicates without re-contacting participants, and we cannot be sure that they are the same people without ID verification.
-
Your name might not match the name on the retailers’ records.
Once we send our request including your name on the consent, name on the card and the number on the card to the retailers, they need to assess if their records match what you have provided us with. If this does not match, we would need to contact you to verify your details. If we have existing ID verification documents, we can provide the confirmation at the same time without any delays.
We hope our ambition to be transparent throughout this project will help us to be the first research team in the world to make past purchase data to be used beyond its intended purposes and expand our understanding of our health behaviours.
If you have any questions about how we use your information, please do not hesitate to contact us via clocs@imperial.ac.uk.
More information on what information we use and how we use it can be found in our privacy policy and on our website (see: About your data)