New UK partnership to transform cancer research

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,^[1] 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 care and research.

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^[2]; bowel cancer patients being spared unnecessary extra doses of chemotherapy, improving their quality of life^[3] and valuable therapeutic advances becoming available to patients in need.

Prof. Geoff Hall, Professor of Cancer Medicine & Digital Health and Consultant Oncologist at LTHT said: “We believe that better access to more quality research data will change the future of cancer treatment and the more we understand about cancer, the better equipped we are to provide treatment and care. Working with Flatiron Health UK will bring endless potential 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 care and research. 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 care and research.”

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 https://www.leedsth.nhs.uk/research/flatiron

^[1] Cancer Research UK (2019). Cancer incidence statistics. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/incidence#heading-Zero

^[2] Using real-world evidence for label expansion: Use of palbociclib in male breast cancer patients

^[3] Flatiron Health real-world data support FDA approval of new dosing regimen for ERBITUX® (cetuximab)

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 LTHT and this income will be used to further invest in LTHT’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 LTHT’s work.

About Leeds Teaching Hospitals NHS Trust

Leeds Teaching Hospitals is one the largest and busiest acute hospital trusts in Europe. Every year Leeds Teaching Hospitals provides healthcare and specialist services for people from the city of Leeds, Yorkshire and the Humber and beyond. We play an important role in the training and education of medical, nursing and dental students, and are a centre of world-class research and pioneering new treatments. 

Leeds Teaching Hospitals has a budget of over £1.5 billion and employs over 20,000 people. Our care and clinical expertise is delivered from seven hospitals on five sites, and they are all joined by our vision is to provide the highest quality specialist and integrated care.

Our staff helped to define the values and behaviours that we should work to, and this has become known as The Leeds Way. This forms the foundation of our culture, our ethos and how we work every day.

About Flatiron Health UK

Flatiron Health UK is a healthtech company dedicated to helping researchers and clinicians thrive and deliver better care for patients today and tomorrow. Through clinical and data science, we translate patient experiences into real-world evidence to improve treatment, inform policy, and advance research. Cancer is smart. Together, we can be smarter. 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. Flatiron Health Inc., is an independent affiliate of the Roche Group. Flatiron.com @FlatironHealth

LTHT Media Contact
Lauren Hansell
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Nina Toor
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