Please help us improve the care of patients with cancer
We are writing to inform you about a partnership that Leeds Teaching Hospitals has established with Flatiron Health UK, part of a US company called Flatiron Health.
Unless you tell us not to, we will share personal information about your care with Flatiron Health UK. This letter and information leaflet explain why we wish to do that and ensure that we have your support.
Flatiron has developed an approach and technology to work with the hospital to improve the quality of our data to support research better and ensure we offer patients the best care possible.
The information we share with Flatiron Health UK may initially include your name, address and other directly identifiable information. Flatiron Health will first remove this information and ensure it is impossible to identify you directly from the data. Flatiron Health will never share your identifiable information with other people.
Flatiron Health will do this at no cost to the NHS and, in addition, will help fund innovations in cancer care in Leeds.
In return, Flatiron Health UK will allow approved health researchers from academic or commercial organisations, like drug companies, access to this data after it is anonymised via a secure online platform to help them make discoveries and develop new cancer treatments. There are strict controls on who can access this anonymised data and how and what they can do with it.
Flatiron Health UK will charge commercial organisations for access to this data to fund their work and generate a profit, which they will share with the hospital. Flatiron will also return this high-quality data to the hospital to ensure we are offering our patients the very best care possible.
After careful consideration and discussion with national research organisations and patient groups, we believe this partnership is fair for the hospital, our patients and Flatiron Health UK.
If you are happy for your data to be shared with Flatiron and more widely to support research, you do not have to do anything. However, if you do not wish the hospital to share your information with Flatiron, please let us know, and we will ensure that your information is not shared.
If you do not want your data to be shared for this project, please let us know by emailing us at [email protected] or by phoning 0113 206 0475 or 0113 206 0447. Page 2 of your letter includes the deadline date, which is 4 weeks from the date at the top of your letter. To ensure we record this information accurately, please share your reference number and your date of birth with us.
You can also opt out via the National Data Opt Out. However, this will result in opting your data out of being used for all NHS research and planning uses, not just from this Flatiron partnership.
If you choose to opt out after the date indicated, data collected on your care from that point onwards will not be included.
If you would like more information please visit our website. You can also email us with queries at [email protected] or call the number above.
Yours sincerely
Professor Geoff Hall Dr Magnus Harrison
Chief Clinical Information Officer Chief Medical Officer
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.
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