Leeds Teaching Hospitals NHS Trust and Flatiron Health UK Cancer Data Partnership
Leeds Teaching Hospitals NHS Trust has partnered with a commercial company called Flatiron Health UK, a subsidiary of a US-headquartered company called Flatiron Health. We have done this to make high-quality data available to researchers, which could lead to improvements in cancer care and treatment.
What is this about?
Research is vital to improve cancer care and treatment. Research depends on high-quality data. Our work with Flatiron Health UK will provide researchers with the best quality data possible.
Why do we need better data?
Most high-quality cancer data comes from clinical trials – testing new drugs or medical devices on volunteers to ensure they are safe and effective.
In the UK, a minority of patients with cancer take part in clinical trials. This means that information from a majority of patients with cancer is not currently used for research purposes.
This is because this patient information is not all stored in one place as it is for patients involved in clinical trials. This information is complex to bring together because of the size of the NHS. For example, your information cannot always be shared between doctors if you are treated in different hospitals.
How will the partnership with Flatiron Health UK help this situation?
Information about the diagnosis and treatment of patients is called “real-world data”. This data would be beneficial to researchers to help understand the best treatments.
Flatiron Health UK can help turn our “real-world data” into high-quality information researchers can use. The more information researchers have available, the more likely they are to find improvements in cancer treatment.
Why do we need your data?
Real-world data from your treatment could make a significant difference in improving cancer care. To ensure we learn from every possible patient, we have also included patients with very early forms of all types of cancer, even those that have been surgically removed.
The more data researchers have available, the more informed, effective and efficient their work will be. This work will make sure that all patients have the opportunity to make cancer treatment better.
What data will be shared with Flatiron Health UK?
Information that will be shared with Flatiron Health UK may include:
- Information about you, including your age, gender, ethnicity or the area in which you live
- Information about your cancer
- Information from biopsies, blood results and scans
- Details about the treatments you are given
Who are Flatiron?
Flatiron are a healthcare technology company that works with hospitals, patients, charities and researchers in universities and the health industry. They aim to increase the availability, quality and use of patient data to make a greater impact on cancer research and treatment. They initially started in the USA. They now work with cancer centres worldwide and are keen to work with centres in the NHS through their local UK-based team.
You can find more information on how they support new developments in cancer on the Flatiron website.
What are the benefits for patients?
As part of this work, Flatiron Health UK will provide, at no cost:
- Leeds Teaching Hospitals with high-quality data on their patients with cancer to improve treatment options
- NHS doctors and UK researchers access to the highest-quality cancer data
Cancer specialists at Leeds Teaching Hospitals believe this work will change the future of cancer treatment and support the development of local research and services.
What are the benefits for Flatiron Health UK?
Flatiron Health UK are doing this to improve the care that patients receive. 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 Leeds Teaching Hospitals. These profits will directly be used to improve the care of patients with cancer in Leeds.
Is it possible to do this work without Flatiron?
Flatiron has over ten years of experience creating high-quality cancer data for research. They have established standardised processes and an internal team of experienced clinicians, data scientists, and technologists. This work could potentially be done in the NHS but would take a significant investment of money and time, and the NHS cannot currently support the work. We don’t believe we can wait for this to change. Patients need us to improve their care now.
How will we protect your data?
Accessing your patient records is necessary to collect information about your disease and treatment. There will be strict controls on access to this data and how this data can be used.
Your data will be shared securely with Flatiron Health UK. Flatiron Health UK will then process data securely to protect your privacy and confidentiality.
We will do all we can to remove your personal details from data before sharing it with Flatiron. However, the Trust is unable to remove some information, for example details contained within scanned copies of documents (such as letters from your GP and results of genetic testing). Flatiron have the ability to do this, and are supporting the Trust by removing these personal details before the information leaves the secure NHS environment. Flatiron Health will never share your identifiable information with other people.
We have involved patients in every step of this partnership and will continue to do so as this partnership progresses.
No one from Flatiron will contact you at any time.
Who else may have access to your data?
Flatiron Health UK will create research-ready data from the information we share with them that will be useful to researchers. They will also return a copy of the data to the hospital so we can make sure we are offering our patients the very best care possible.
Flatiron Health UK will combine data from Leeds with data from other NHS hospitals over time, making a UK database to improve cancer research. This database will also be made available to the hospital to improve treatment options and carry out our own research.
Subject to independent oversight and approval, the database will be licensed and made available to academic and commercial research organisations to improve cancer care and treatment.
Your privacy will always remain protected, and researchers accessing the datasets will never be able to identify you from the data.
Flatiron Health UK will not make this database available to people and companies who are not focused on using the database for improving cancer care and treatment. Flatiron Health UK and the hospital will ensure that insurance or marketing companies do not have access to the data.
Flatiron Health UK will regularly publish a list of those given access to the database.
Will researchers have to pay to access my data?
Commercial organisations will pay a fee to Flatiron Health UK to access datasets for research purposes. Flatiron Health UK will share this fee with Leeds Teaching Hospitals, and we will use this income to invest further in our own cancer research projects and improve care for our patients.
The partnership with Flatiron Health UK does not cost Leeds Teaching Hospitals money and will not result in investment being removed from cancer care or any other area of our work.
Respecting patient choice
Leeds Teaching Hospitals respects a person’s right to choose whether their data is shared with Flatiron Health UK. We have consulted widely about whether patients should be asked to opt-in (consent) or opt-out of their data being used as part of this project. This consultation has encouraged us to reflect the national opt-out process and confirmed that we should learn from the experiences of as many patients as possible. Therefore we have chosen this opt-out process. If you are happy that your data is securely shared to support research, you do not have to do anything.
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. To ensure we record this information accurately, please share the reference number at the top of your letter and your date of birth with us.
You can also opt-out via the National Data Opt Out. However, this will result in opting out of using your data for all NHS research and planning uses, not just from this project. People who have already said, as part of the NHS National Data Opt Out, that they want to avoid their patient information being used will not be included.
If you opt-out after the deadline date indicated on page 2 of your letter, data collected on your care from that point onwards will not be included. You can contact us using the details provided if you want more information or to learn more.
Need more information before making your choice?
If you want more information or to ask questions before deciding, contact us by email at [email protected].
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