Research Data Collaborations

We collaborate with some of our partners to provide support, both technical and staffing, to enable LTHT to analyse their patient data to produce scientific research. In turn, these collaborations can help shape and improve the care we give to our patients in the future.

Real World Evidence Alliance at Leeds (REAL)

The REAL (Real World Evidence Alliance at Leeds) team collaborates with Leeds Teaching Hospitals Trust (LTHT) and commercial and academic partners. We aim to improve healthcare globally using data, technology, analytics, and expertise. The collaboration provides LTHT with the technical and staffing support to analyse patient data and produce scientific research. The results of these studies can help shape and improve patient care in the future.

All studies comply with the hospital’s strict information governance policies. Identifiable patient data is never shared with anyone outside the hospital, and the studies do not include data from patients who have opted out of data sharing. The reports resulting from our studies have been presented at national and international conferences and published in peer-reviewed journals.

Flatiron Health UK Partnership

We have partnered with Flatiron Health UK to create valuable collections of high-quality data for researchers to use in developing treatments and care for cancer patients.
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 affect real people and their lives. By working with Flatiron Health UK, we can gather, anonymise and use the data we hold for 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 allowed to opt-out should you wish. The information on this website will help you make an informed decision.

The 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

This data will be anonymised and made available as unidentifiable research-ready data collections – also known as datasets – for academic and commercial researchers. Access to this data is granted subject to independent oversight and approval for use in research projects to improve cancer care and treatment in the UK.

Researchers from Leeds Teaching Hospitals NHS Trust will also have access to these datasets for use in our own research projects.

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.

Leeds Teaching Hospitals NHS Trust (LTHT) will make available the data of patients who have yet to opt-out of Flatiron Health UK. This will be securely uploaded to a shared LTHT and Flatiron Health UK platform, where the data will be anonymised. This platform is hosted within the NHS Firewall, and no data will be removed from within the Firewall until it has been anonymised.

Once this process is complete, the anonymised data will be securely transferred to Flatiron Health UK’s platform in the UK for further processing. The research-ready data will be hosted on Flatiron Health UK’s Secure Data Environment platform, accessible to approved researchers.

The data gathered in this project will be secured at every process step. It will remain hosted in the UK and worked on only by UK-based employees of Flatiron Health UK, subject to strict confidentiality provisions.

Your privacy will always remain protected, and researchers accessing the data sets will never be able to identify you from the data shared. Flatiron Health UK will not make the data available to people and companies who are not focused on using the data for improving cancer care and treatment. Insurance or marketing companies will never have access to the data.

If we plan to include your information in this project, you will receive a letter directly from Leeds Teaching Hospitals NHS Trust.

There is no need to contact us in advance of receiving this letter. Please note that it will take several months to contact all patients involved and your information will not be included in the project until you have been notified and given the opportunity to opt out.

If you have received a letter and would like to opt out, please do so by the date given in your letter.

You can opt out by emailing [email protected] or by calling 0113 206 0475 or 0113 206 0447.

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. People who have already said, as part of the NHS National Data Opt Out, that they do not want their patient information being used, will not be included.

If you choose to opt out after the date indicated in your letter, data collected on your care from that point onwards will not be included.