Research is integral to improving cancer care and developing treatments. However, research depends on high quality data being available.
Currently, the main way that researchers have access to the data they need is from patients who take part in clinical trials. However only about 20% of cancer patients have the opportunity to take part in clinical trials. This only represents a small proportion of our patients and leads to health inequalities with crucial information on 80% of people with cancer missing. This has left gaps in our knowledge about how cancer and the treatments we currently use affects real people and their lives.
By working with Flatiron Health UK, we will be able to gather, anonymise and use the data that we hold for all of our cancer patients to create data sets that researchers can use for their important work. This will enable us to learn from the experiences of all cancer patients – no matter their background or previous interaction with the NHS.
Patients will be contacted directly by Leeds Teaching Hospitals NHS Trust if we plan to include your information in this project and you will be given the opportunity to opt-out should you wish. The information on this website will help you make an informed decision.
Flatiron has support under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information without consent, from The Health Research Authority, on advice from the Confidentiality Advisory Group (CAG), an advisory body which provides independent expert advice on the use of confidential patient information without consent in England and Wales.