One in two of us will get cancer during our lifetime, and cancer is the leading cause of death across the UK.
Even with the recent advances in cancer care, the UK continues to lag behind other countries in terms of cancer survival. As a nation, we urgently need to address this long-standing underperformance in how we diagnose and treat cancer – and ultimately improve our ability to save people’s lives.
Better use of data is a key part of the solution. Using cancer data more effectively could improve cancer survival rates, potentially contributing to saving the lives of 30,000 cancer patients a year.
Of course, the NHS already collects lots of cancer data and we have one of the best cancer registries in the world. But we know that it is not always quick and easy for researchers to access and analyse data, and link this data together, to develop new treatments and improve cancer services. As a result, while we’ve got the data to identify the problem of underperformance in cancer survival, we haven’t got sufficient data – or sufficiently connected and accessible data – to adequately develop the solution.
DATA-CAN – the Health Data Research Hub for Cancer – aims to address this by removing many of the existing barriers faced by researchers trying to access cancer data in the UK. We want to enable researchers to get access to high-quality cancer data so they can learn from every case of cancer, helping ensure that patients receive the best cancer care and making it easier for patients to get access to clinical trials of the latest treatments.
We will only be able to achieve this, and deliver the outcomes that are important to patients, if patients are at the centre and heart of what we do. Patients will, of course, be able to decide how their data is used and accessed, and we are working with charities and patients so we can listen and act on what matters to people living with cancer. As a brand new initiative, we are developing our approach to ensure that patients are influential at all levels of DATA-CAN – for example, voting on the steering committee and advisory boards, supporting management decision-making, and reviewing our plans.
DATA-CAN is one of seven hubs announced last month by Health Data Research UK to speed up research for new medicines and treatments, support quicker diagnoses and potentially save lives. Cancer is a national problem so we will improve access to data from all across the country. The founding partner organisations are UCLPartners, Queen’s University Belfast, University of Leeds and Leeds Teaching Hospitals, Genomics England and IQVIA, working together with cancer centres, researchers and charities from all four nations of the UK.
As Director of DATA-CAN, I’m proud to be working with such a committed team of cancer clinicians and researchers, data experts, patients, charities, industry partners and others from across the UK. Together we want to unlock the huge potential of data to transform cancer care. If you would like to find out more or get involved, please get in touch.
Health Data Research UK publishes ‘Recommendations for Data Standards in Health Research’
6 December 2021
UK Health Data Alliance White Paper is another key step towards consistency and harmonisation in data standards across the sector
Data – A New Direction: Health Data Research UK response
1 December 2021
Response to the UK Government's launch of a public consultation on reforms to the UK’s data protection regime.