Research at the University of Southampton is carried out to the highest standards. The University is publicly funded so it has to make sure that personal data (e.g. name, address, date of birth) is only used when it's the best thing to do for the public. This means that when you agree to take part in a research study, we will use information about you in the ways needed, as outlined, to carry-out and complete the research project.
The University’s data protection policy about the use of personal data by the University can be found on its website.
The data we will be collecting for this study includes:
· Your name and contact details. This is to allow us to link the data we will be collecting from your healthcare provider, Public Health England and Welsh Cancer Intelligence and Surveillance Unit in relation to the CANDID study.
· Information about the symptoms or tests you may have experienced at the time of recruitment; along with optional blood/saliva sample and lifestyle information such your age, job status, questions about how you interact with healthcare professionals and your views on how you feel. This is for us to learn a bit more about the people taking part in the study and to allow us to use this information to help with identifying what is important, or not important, when people consult their health care provider.
· Medical notes from your GP. These are collected at the end of the study, with your name and personal details removed. We use the notes to see if you have had a diagnosis from the symptoms you had when you joined the study.
· Information from Public Health England and Welsh Cancer Intelligence and Surveillance Unit about anyone in the study who has been recorded as having a diagnosis of cancer within 5 years of entering the study. This will be linked to information via your Study ID with name and personal details removed to ensure you cannot be identified.
Our privacy notice for research participants has more information on how the University of Southampton collects and uses personal data when you take part in one of our studies and can be found here
Any personal data we collect in this study will only be used for the research and will be handled in line with University policies and data protection law. If any personal data is used it will not be given to anyone else without your consent unless the University of Southampton is required to disclose it by law.
Data protection law means we have to have a valid legal reason (‘lawful basis’) to collect and use your Personal data. The lawful basis for using personal data in this research study is to explore how the CANDID study might be useful in improving early diagnosis of Lung or Colorectal Cancer. Personal data collected for research will not be used for any other reason.
For data protection law, the University of Southampton is the ‘Data Controller’ for this study, which means that we are in charge of looking after your information and using it properly. The University of Southampton will keep information which might identify you (for example, your name, age) for a maximum of 10 years after the study has finished when any link between you and your information will be removed.
To protect your rights, we will use as little personal data as we can for our study. Your data rights – like accessing, changing, or transferring your information - might be limited, but only for the study to be reliable and truthful. The University will not do anything with your personal data that you would not reasonably expect.
If you have any questions about how your personal data is used, or want to use any of your rights, please consult the University’s data protection webpage where you can make a request using our online form. If you need further assistance, please contact the University’s Data Protection Officer (data.protection@soton.ac.uk).