Transparency statement for participants
Please note that no changes have been made to the way your data are used by the SEARCH study. However, the law requires that we provide the following information for clarity and transparency.
- Your data are stored by The SEARCH Team, Tel: (01223) 740148; Email: The SEARCH Team
- Data are used for research to find out more about the causes of cancer, so we can find ways to prevent it; this is a task in the public interest.
- SEARCH data has presented a unique opportunity to link cancer survivor data with Public Health England (PHE)’s COVID-19 test data. Together with follow up over a number of years and linking in data from medical records held eg by NHS Digital, will give valuable genetic epidemiological insights into the susceptibility and long term effects of Covid19 in cancer survivors.
- Data includes information such as your name, address, date of birth, NHS number, medical records, and any information provided by you.
- If more information is needed about your health, identification details are provided to your hospital and/or central NHS bodies to enable them to match these to your records and relay the relevant data back to us. The identification details are shared with these bodies only to assist in identifying your records.
- Data may be held for many years, but will be destroyed when no longer required.
- If you wish to leave the study, you can do so at any time; you do not have to give a reason. Your decision will not affect your care or treatment, or that of anyone in your family. If you leave the study, we will destroy your samples and data if you ask us to.
- You can find out more about how we use your information by contacting us (see top of page). If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer at firstname.lastname@example.org. 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) at www.ico.org.uk