University Hospitals of Leicester NHS Trust, one of the largest acute hospital trusts in the UK, has partnered with Flatiron Health UK to translate Leicester, Leicestershire and Rutland’s cancer patient records into high-quality data to expand cancer research opportunities. Increased access to cancer data will further increase possibilities in developing and improving cancer care and treatment for patients in the UK.
Each year, more than 375,000 people in the UK are diagnosed with cancer, and it is crucial that we strive to deliver the very best care and treatment we can. Research is one of the ways that can improve care; however, currently only 20% of people with cancer have the opportunity to take part in research through clinical trials. Data that can be used in research typically only comes from clinical trials, which only represents a small proportion of cancer patients. As a result, this leads to health inequalities, with crucial information on 80% of people with cancer missing, leaving knowledge gaps about how cancer and the treatments we currently use affect real people and their lives.
Through this ground-breaking new partnership, which has been approved by the NHS Health Research Authority – the agency responsible for protecting and promoting the interests of patients and the public in health and social care research – we want to improve the quality of cancer data to bring about real changes in cancer research and care.
Flatiron Health UK will bring together clinicians, epidemiologists, software engineers, and data scientists to turn unorganised cancer information – like clinical letters and reports – into high-quality anonymised information that can be used by approved researchers to find these improvements for cancer treatment and care.
This partnership builds on Flatiron Health’s experience and work in the UK and across the globe. The company’s approach in curating real-world data and driving innovation has led to high impact outcomes, with regulatory approvals in label expansion2, dosing regimens, access to targeted therapy options and launching prospective cancer care studies. As Flatiron UK continues to expand its critical work with UHL, this partnership is a major step forward in creating a unique and leading cancer RWD database in the UK to unlock new opportunities to enhance cancer research and care.
Nigel Brunskill, Director of Research and Innovation at the University Hospitals of Leicester NHS Trust said: “As part of our strategy to grow as an international centre of excellence for research, education and innovation we are delighted to be partnering with Flatiron Health UK. We are committed to ensuring we are making best use of health data to develop and improve our research and clinical services. By collaborating with partners such as Flatiron Health UK, we can apply an evidence-based approach to significant health challenges to help with the development of new treatments which will improve outcomes for patients.”
Dr. Arun Sujenthiran, Clinical Lead and Medical Director, Flatiron Health UK said: “We are thrilled to partner with the University Hospitals of Leicester NHS Trust. Our work together will aim to drive foundational change in cancer research, understanding how treatments work in diverse populations, increase access to clinical trials, and support meaningful insights to a global cancer population.”
Current and former cancer patients have been involved in every step of the process to establish this partnership and will continue to be consulted and involved. Patients can opt-out from the use of their data in this partnership should they wish to. Existing opt-outs recorded through the NHS national data opt-out will also be respected.
For patients who do not opt-out, Flatiron Health UK will turn the unorganised cancer patient information into curated, research-ready anonymised datasets that can be used by the NHS and researchers, in academia and industry, to accelerate cancer research and improve care.
The curated data will also be returned to UHL where its uses include predicting which type of cancer patient is most at risk of symptoms worsening, treatment side effects or relapse to help inform patient care. Individual patients are only identifiable to UHL.
The curated and anonymised data will be uploaded into a secure data environment (SDE)* – a controlled and secure environment for research and analysis. The data in the SDE cannot be reidentified, and there are strict controls on who can access this data and what they can do with it. Access for researchers (clinical, academic, and commercial) will only be granted subject to a robust approval process led by an external Research Transparency Panel with clinical, patient, and lay representation, and never with users for purposes that are not in the interest of the public or to generate patient benefit. Flatiron Health UK will charge commercial researchers (e.g., pharmaceutical companies) a fee to access the SDE, or to commission Flatiron to run analysis projects, which will be shared with UHL to invest in their own cancer research projects and to improve care for cancer patients in Leicester, Leicestershire and Rutland.
Adam Manhi, Head of Network and Commercial Partnerships, Flatiron Health UK said: “Flatiron UK’s partnership with the University Hospitals of Leicester NHS Trust is another step towards realising our vision in the UK to learn from the experience of every person with cancer, offering more insights, more targeted care and better outcomes. Together with UHL, we'll aim to accelerate cancer research and improve the quality of care globally.”
All patients who are identified as being suitable for this research project will be contacted directly by post and will have the opportunity to ask questions, and/or opt-out, before the project begins. It will take several months for all patients to be contacted.
In June 2023, Flatiron Health UK signed a similar collaboration with Leeds Teaching Hospitals NHS Trust, approved by the Health Research Authority. For more information on Flatiron and its partners’ approaches to such collaborations, please visit this dedicated webpage.
Notes to editors
*Secure data environments
SDEs are highly secure online platforms from which data can be accessed remotely by authorised researchers for use in their research, and in a controlled, recorded manner so uses can be tracked and monitored. The data is never ‘released’, shared, or distributed – the researchers have to analyse the data within the SDE. All of the data on the Flatiron Health UK SDE is anonymised – offering an additional protection for the health data they have processed.
You may be more familiar with the term ‘trusted research environment’ or TRE. TREs are a subset of SDEs, therefore the same security measures are applied. TREs featured heavily in the recent Goldacre Review, Better, broader, safer: using health data for research and analysis, which helped inform the Department of Health and Social Care health data strategy, Data saves lives: reshaping health and social care with data. Within this strategy, the Government describe plans to mandate the use of SDEs for NHS data.
Key Facts
Information that will be shared with Flatiron Health UK may include:
- Information about the patient including age, gender, ethnicity, the area in which they live
- Information about their disease including the type of cancer
- Information from biopsies, blood results and scans
- Details about the treatments they are given and whether they work
Undertaking this project without Flatiron Health UK
This work could potentially be done in the NHS but will take a very significant investment of money and time and the NHS is simply not able to support the work at this time. We don’t believe we can wait for this to change. Cancer patients need us to improve their care now.
Financial information
Commercial organisations like pharmaceutical companies will pay a fee to Flatiron Health UK to access datasets for research purposes. Flatiron Health UK will share this fee with UHL, and this income will be used to further invest in UHL’s own cancer research projects and to improve care for their cancer patients. The partnership with Flatiron Health UK will not result in investment being removed from cancer care or any other area of UHL’s work.
About University Hospitals of Leicester NHS Trust
The University Hospitals of Leicester NHS Trust (UHL) is a large NHS teaching trust providing integrated patient care. We are a national and regional centre for specialist treatment, a renowned biomedical research centre and the local hospital for communities in Leicester, Leicestershire, and Rutland. We have an established international reputation for research excellence in cardiovascular, respiratory, diabetes, renal and cancer medicine. Together with University of Leicester, Loughborough University and De Montfort University we provide world-class training for the future NHS workforce. Our three acute sites are the Leicester Royal Infirmary, the Leicester General Hospital, and the Glenfield Hospital. We provide services in seven community hospitals as well as in people’s homes and virtually. As a large health and care provider, we are also a significant local employer. More than 18,000 people from over 70 different nationalities work at UHL, making us the largest employer in the city and one of the largest in the region.
About Flatiron Health UK
Flatiron Health UK is a health tech company expanding the possibilities for point of care solutions in oncology and using data for good to power smarter care for every person with cancer. Through machine learning and AI, real-world evidence, and breakthroughs in clinical trials, we continue to transform patients’ real-life experiences into knowledge and create a more modern, connected oncology ecosystem. Flatiron Health is an independent affiliate of the Roche Group. Flatiron.com @FlatironHealth. Flatiron Health UK is part of Flatiron Health Inc., a global company, with offices in the United States, Germany, and Japan. Flatiron Health UK Ltd operates separately from other Flatiron companies, with local operations, employees, and processes.
University Hospitals of Leicester NHS Trust Media Contact
Jacob Wilkinson, Communications Officer (Media and External Affairs)
jacob.wilkinson@uhl-tr.nhs.uk
cc: communications@uhl-tr.nhs.uk
Flatiron Health Media Contact
Nina Toor
press@flatiron.com
