New UK partnership to transform cancer research
20 June 2023
New collaboration between Leeds Teaching Hospitals NHS Trust and Flatiron Health UK plans to utilise cancer data to expand research and improve care for UK cancer patients
Leeds Teaching Hospitals NHS Trust (LTHT), one of the largest acute hospital trusts in Europe, has partnered with Flatiron Health UK to translate Leeds’ cancer patient records into high-quality data to expand cancer research opportunities. Increased access to cancer data will increase possibilities in developing and improving cancer care and treatment 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 we 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 we know only represents a small proportion of our patients. This is leading to health inequalities, with crucial information on 80% of people with cancer missing, leaving gaps in our knowledge about how cancer and the treatments we currently use affects real people and their lives.
Through this ground-breaking new partnership, which has been approved by the NHS Health Research Authority – the NHS’ ethics body – 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 researchers to find these improvements for cancer treatment and care.
This partnership builds on Flatiron Health’s experience and work in the US. Their approach has led to men with breast cancer being able to access life-extending drugs that were previously only available to women; bowel cancer patients being spared unnecessary extra doses of chemotherapy, improving their quality of life and valuable therapeutic advances becoming available to patients in need.
Prof Geoff Hall, a Professor of Cancer Medicine & Digital Health at the University of Leeds and a Consultant Medical Oncologist at LTHT said: “We believe that better access to high quality research data has the potential to change the future of cancer treatment. The more we understand about cancer, the better equipped we are to provide treatment and care. Working with Flatiron Health UK could bring significant benefits for current and future patients. Flatiron Health UK’s experience in working with data in this way will enable us to gain a better understanding of cancer and use this to improve treatment and care for patients. We are excited to take the next step in this partnership, which we have been developing for more than two years alongside patients, charities and stakeholders.”
Dr Arun Sujenthiran, Clinical Lead and Medical Director, Flatiron Health UK said: “This exciting new partnership is the first of its kind in the UK. We want to learn from the experiences of all cancer patients - no matter their background or previous interaction with the NHS – so we’re able to provide new cancer research opportunities and support improvements to cancer patient care across the population of Leeds and the local region. Patients are at the heart of this project, and LTHT and Flatiron have been working with patients and the public right from the start to help us design the partnership.”
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 will also have the ability to 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 LTHT 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 LTHT.
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, which will be shared with LTHT to invest in their own cancer research projects and to improve care for cancer patients in Leeds.
Prof. Phil Wood, LTHT Chief Executive and former LTHT Chief Medical Officer said: “We know that there are many people who are not able to access cancer care and that there can be huge differences in treatment outcomes. This partnership will enable researchers to make huge steps forward in progressing cancer treatment and care for all of our communities. This has the potential to benefit not just patients in Leeds, but cancer patients worldwide. We have undergone a lengthy consultation process during the development of this project and the appropriate procedures and safeguards are in place to protect our patients whose data will be included.”
Adam Manhi, Head, Strategic Partnerships, Flatiron Health UK said: “Partnering with patients and the wider UK healthcare ecosystem is the cornerstone of Flatiron Health UK’s approach to becoming a trusted partner in the mission to improve cancer research and care. We have forged meaningful relationships with key stakeholders in the UK healthcare community, including, the National Institute for Health and Care Excellence (NICE), HDR-UK, DATA-CAN and, of course, LTHT. This partnership with LTHT will allow us to help local healthcare providers and organisations to generate high-quality data to advance cancer research and care.”
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. For more information in the meantime visit www.leedsth.nhs.uk/research/flatiron
 Cancer Research UK (2019). Cancer incidence statistics.
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