How research and data improve care
Through collecting, analysing and sharing data, we can learn more about developing and providing tailored health care and treatment.
Good data can provide valuable insight and understanding. It can show us when or how to do things that will have the most impact for individual patients or groups of people with similar health care needs.
It is difficult to make informed improvements to certain treatments without analysing the right data.
Real-world data about your treatment could make a significant difference to cancer care, both now and in the future. The more data researchers can analyse, the more informed and effective their work will be. This helps take into account the experiences of all patients to influence treatment improvements.
Sharing and using good quality data can change the future of cancer treatment and support better local research and services.
Current limitations with data stored in different places
Currently, most high-quality cancer data comes from clinical trials. For example, testing new drugs or treatment devices with patients who volunteer to take part, to ensure they are safe and effective.
However, in the UK, only a minority of patients with cancer choose to take part in clinical trials. This means that the information held about most cancer patients is in a variety of locations, recorded using different formats and on different systems.
The size and structure of the NHS also means information cannot always be safely or easily shared between doctors who work in different places or on different computer systems.
Because of this, much of the data is not easy to collect, analyse or examine. This makes it difficult to use for research or to learn from, to improve treatment.
It’s only by recording and formatting data consistently, all together in one place, that we can use it in a purposeful and meaningful way.
Working in partnership to better understand cancer data
To overcome the difficulties and limitations of data stored in different places, Newcastle Hospitals have partnered with a company called Flatiron Health UK.
Through a carefully regulated partnership, we are working to provide high-quality data about the diagnosis and treatment of people investigated for a possible diagnosis of cancer.
This data will help researchers – including Newcastle Hospitals staff – to understand and explore the best treatments for certain types of cancer and for different patient groups.
Flatiron Health UK can help turn our real-world data into high quality information that researchers can use. The more information we can make available, the more likely improvements and breakthroughs in cancer treatment will be found.
About Flatiron
Flatiron are a healthcare technology company, with over ten years’ experience of working with hospitals, patients, charities and researchers in universities and the health industry. They aim to increase the availability, quality and use of high-quality patient data to make a greater positive impact on cancer research and treatment.
Flatiron cleans, refines and sorts data, through an internal team of experienced clinicians, data scientists, and technologists. The specialist resources to do this work are not available in Newcastle Hospitals. This is why this data partnership is required to develop how the NHS is able to use data to improve care.
You can find more information about Flatiron’s work and their partnerships with other NHS hospitals at www.flatironhealth.co.uk
What data will be shared?
Information that will be shared with Flatiron Health UK could include:
- High level information about you, including age, gender, ethnicity and the area
- Information about your cancer or possible diagnosis of cancer.
- Information from biopsies, blood results and scans.
- Details about the treatments you are given.
All reference to your full name, date of birth and full address will be removed during the process and before any wider access is given.
All reference to your full name, date of birth and full address will be removed during the process and before any wider access is given.
Who else may have access to the 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 Newcastle Hospitals, so we can make sure we are offering patients the very best care possible.
Through pooling and storing collated data in one place, Flatiron Health UK will be able to provide packages of relevant data to commercial organisations involved in cancer care and treatment.
Data from Newcastle will be combined 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 information for improving cancer care and treatment.
No insurance or marketing companies will 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 the data?
Flatiron Health UK will charge commercial organisations to access datasets for research purposes. Income generated from this will be shared with Newcastle Hospitals to invest in cancer research projects and improve care.
The partnership with Flatiron Health UK does not cost Newcastle Hospitals any money.
How your data will be protected
Relevant information from your patient record, about your specific illness and treatment, will be shared. This would only include information needed for research and there will be strict controls on access to this data. These controls are a legal requirement, which also apply to how your data is used, and will be closely followed by anyone involved in the work.
Your privacy and confidentiality are extremely important. Your data will always be stored, shared and processed securely.
Newcastle Hospitals will do everything possible to remove your personal details from data before sharing it with Flatiron. If we are 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 can do this and will remove these personal details before the information leaves the secure NHS environment.
Flatiron Health will never share your identifiable information with other people.
No one from Flatiron will contact any patient directly, at any time.
How to opt out
Newcastle Hospitals respects your right to choose whether your data is shared with Flatiron Health UK. Patients have been consulted about whether they should be asked to opt-in (consent) or opt-out of their data being used as part of this project.
This consultation has confirmed that we should learn from the experiences of as many patients as possible. We have therefore chosen an 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 within 4 weeks of receiving your letter by emailing us at [email protected] or by calling 0191 213 7783.
To ensure we can record this information accurately, please share your date of birth and reference number, which you can find at the top of your letter. You can also opt-out using 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.
If you opt-out after the date indicated, data collected on your care from that point onwards will not be included. You can contact us using the details provided if you want to learn more.
If you want more information, or to ask questions before deciding, contact us by email at [email protected].
