New data hub will improve cancer care

Researchers from Leeds are collaborating on a new national data hub that aims to transform how cancer information from across the UK can be used to improve patient care.

Professor Geoff Hall, who will be the Clinical Director of DATA-CAN

Professor Geoff Hall, who will be the Clinical Director of DATA-CAN. September 2019

The pioneering initiative has now been awarded £4.5 million to deliver DATA-CAN – the Health Data Research Hub for Cancer – and is yet another example of the excellent interdisciplinary research being undertaken at Leeds.

The project will work closely with patients to bring their clinical data together and use this information to help develop improved cancer treatments, give patients faster access to clinical trials and understand how we can improve NHS cancer services.

One in two people will get cancer during their lifetime. Almost 400,000 new cases are diagnosed in the UK every year, and cancer costs the NHS £7 billion annually.

The Independent Cancer Taskforce recommended in 2015 that using de-identified cancer data more effectively could potentially contribute to saving the lives of 30,000 patients a year.

Bringing data together

Professor Geoff Hall, from the University and Leeds Teaching Hospitals NHS Trust, will be the Clinical Director of DATA-CAN. He said: “This project will help empower the NHS to use data and analytics to optimise care for patients, while supporting universities and companies who work with us to discover and develop new treatments.

“A key focus of the hub will be to support the development and delivery of clinical trials and to identify which trials are suitable for individual patients. By doing so, we will ensure patients have access to new, potentially life-saving treatments.”

The hub will be supported by patients, charities, clinicians, academic and industry-based researchers and innovators, and will involve cancer centres across the UK.

DATA-CAN is being funded by Health Data Research UK, the national institute for health data science, which is also funding six other health data hubs. The seven hubs are part of a four-year £37.5 million investment from the Government Industrial Strategy Challenge Fund (ISCF), led by UK Research and Innovation (UKRI), to create a UK-wide capability for the safe and responsible use of health-related data on a large scale.

The national hub has been founded by researchers in Leeds, London and Belfast. The founding partners are:

  • UCLPartners
  • Queen’s University Belfast, representing Northern Ireland and Wales
  • University of Leeds and Leeds Teaching Hospitals, representing Yorkshire and Humber
  • Genomics England; and
  • IQVIA.

Science Minister Chris Skidmore said: “We will all know someone who has been through the trauma of a devastating illness, and received care and treatment through our brilliant NHS.

“The new data hubs announced today have the potential to save millions of people’s lives. They will take the information the NHS has at its fingertips to identify patterns, speed up research and find the treatments we all hope for.”

Leading the way

Researchers in Leeds are leading the way in involving patients and the public in the design and running of the project from the outset. This will ensure patients have a decisive say in how their de-identified health data is used for research.

Dr Christopher Carrigan, from Leeds, is involved in DATA-CAN and brings his expertise from patient engagement in national cancer data, through Bowel Cancer Intelligence UK. He is also involved with the national patient movement use MY data, which aims to allow every willing patient to give their data to help others, whilst safeguarding individual privacy and anonymity.

He said: “As more insight and knowledge into diagnosis, care and outcomes becomes possible with developments in data quality and linkages, we have to keep the views and expectations of patients at the heart of what we do.

“The key principles of patient engagement, inclusion and transparency will be critical to this work. We have to be clear and open about everything the programme does and how it operates, and this must all be within the reasonable expectations of patients and their families – there should be no surprises. Placing patients at the heart of every element of this work is fundamental.”

Natalie Pearce after chemotherapy in 2013 (left) and now in 2019 (right). September 2019Natalie Pearce after chemotherapy in 2013 (left) and now in 2019 (right) 

A ‘future without cancer’

Natalie Pearce, 47, is a primary school teacher from Leeds and a survivor of ovarian cancer. She said: “I was diagnosed with advanced ovarian cancer at the relatively young age of 40. It was a huge shock, to say the least, as I was healthy in all other respects.

“My doctor, Professor Geoff Hall, suggested I take part in a clinical trial, meaning some of the chemotherapy was given directly into my abdomen. I have no idea if that’s why the cancer hasn’t returned and I’m still clear of it, but I’m so grateful I had the opportunity to take part in that trial.

“That’s one of the reasons I think this data hub will be invaluable – to look at those small groups of people who’ve taken part in clinical trials and to try and understand why some patients’ cancer didn’t return.

“The answer in the long term is to compare and gather a great number of patients so you have a much bigger pool of data to be accessed by a wider range of researchers.

“If there’s anything about my cancer data that could help someone else, I would want to share it. Everyone’s data will be anonymised, so I don’t think anybody should hesitate because it can only help in the future, and help us have a future without cancer.”

Working in collaboration

Collaborators from Yorkshire and Humber include the University of Leeds, Leeds Teaching Hospitals NHS Trust, University of Sheffield, Sheffield Teaching Hospitals, Sheffield Children’s Hospitals and the Yorkshire and Humber Local Health Care Record.

Dr Charlie Davie, the DATA-CAN Director from UCLPartners, said: “This collaboration will transform how cancer clinical data is used to improve patient care.

“We’re privileged to be working with world-leading experts in human data science. This unique collaboration will help us to deliver truly transformative change in cancer care.”

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