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.
