Frequently asked questions
Information for current and former cancer patients
Leeds Teaching Hospitals NHS Trust (LTHT) has established a partnership 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 improving cancer care and treatment. Research depends on high quality data. Our work with Flatiron Health UK will provide researchers with the best cancer data possible.
Why do we need better data?
Most high-quality cancer data comes from clinical trials - testing new drugs or medical devices on volunteer patients to ensure they are safe and effective.
In the UK about 20% of cancer patients take part in clinical trials. This means there is information for about 80% of cancer patients that is not currently able to be used for research purposes.
The reason for this is that this patient information is not all stored in one place or on one system as it is for patients involved in clinical trials. Because of the size of the NHS, this information is difficult to bring together. For example, if you are a patient in different hospitals, your information cannot always be shared between doctors.
How will the partnership with Flatiron Health UK help this situation?
Information about the diagnosis and treatment of patients who aren’t in a clinical trial is called ‘real world data’. This data would be very useful to researchers to help create the best cancer treatments possible.
Flatiron Health UK can help turn our “real world data” into high-quality information (datasets) that can be used by researchers. The more information researchers have available to them, the more likely they are to find improvements for cancer treatment.
Why do we need your data?
For cancer patients not involved in a clinical trial, real world data from your treatment could make a significant difference to improving cancer care.
The more data that researchers have available to them, the more informed, effective and efficient their work will be. This work will make sure that all cancer 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 and the area in which you live
- Information about your disease including the type of cancer
- Information from biopsies, blood results and scans
- Details about the treatments you are given and whether they work
What are the benefits for patients?
As part of this work, Flatiron Health UK will provide, at no cost:
- Leeds Teaching Hospitals NHS Trust (LTHT) with high quality data on their cancer patients to improve treatment options
- NHS doctors and UK researchers access to the highest quality cancer data
Cancer specialists at LTHT 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 cancer patients receive. Flatiron Health UK will charge commercial organisations for access to this data to fund the work they do and to generate a profit which they will share with us to reinvest in our cancer services.
Is it possible to do this work without Flatiron?
This work could potentially be done by the NHS but will take a very significant investment of money, time and specialist training, which e NHS is simply not able to support at this time. We don’t believe we can wait for this to change. Cancer patients need us to improve their care now.
Flatiron Health UK has developed innovative processes and software to turn unorganised patient information into high-quality datasets that can help improve the treatment, care and quality of life for cancer patients.
How will we protect your data?
Accessing your patient records is necessary to collect information about your disease and treatment. There will be very strict controls on access to this data and how this data can be used.
Your data will be shared securely with Flatiron Health UK. Data will then be processed by Flatiron Health UK in a secure environment, designed to protect patient privacy and confidentiality.
We have involved cancer patients in every step of this partnership and will continue to do so as this partnership progresses.
Who else may have access to your data?
Flatiron Health UK will create research ready data from the information that we share with them that will be useful to researchers. They will also return a copy of the data to us so we can make sure we are offering our patients the very best care possible.
Flatiron Health UK plans to combine data from Leeds with data from other NHS hospitals over time making a UK database with the purpose of improving cancer research. This database will also be made available to us to improve treatment options and carry out our own research.
Subject to independent oversight and approval, the database will be licenced and made available to both academic and commercial research organisations for the purposes of improving cancer care and treatment.
At all times your privacy will remain protected and researchers accessing the datasets will never be able to identify you from the data shared.
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 Leeds Teaching Hospitals will ensure that insurance or marketing companies (as examples) do not have access to the data.
Flatiron Health UK will regularly publish the data access requests to the real-world database on their website describing who has requested access, when and for what purpose.
Will researchers have to pay to access my data?
Commercial organisations like drug companies will pay a fee to Flatiron Health UK to access datasets for research purposes. Flatiron Health UK will share this fee with us and we will use this income to further invest in our own cancer research projects and to improve care for our cancer patients.
The partnership with Flatiron Health UK does not cost money to the NHS or Leeds Teaching Hospitals and will not result in investment being removed from cancer care or any other area of our work.
What do I need to do if I am happy for my data to be shared?
If you agree for your data to be securely shared for research, you do not have to do anything.
How do I opt out?
If you do not want your data to be shared for this project, please follow the instructions on our opt out page.
What if I miss the opt out deadline or change my mind about my data being used?
You can contact us using the details on the opt out page. The information collected on your care from that point onwards will not be included in Flatiron datasets.