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Unlocking the power of cancer data across the four nations

8th December 2020
This blog story looks at how DATA-CAN is working across all four nations.

One of DATA-CAN’s founding principles was that it should be a UK-wide partnership – drawing on the strengths of data research, and enabling access to health data, across the whole country. This principle is echoed by Health Data Research UK and our stakeholders such as the Association of the British Pharmaceutical Industry, the BioIndustry Association, Cancer Research UK and the National Institute for Health Research.

DATA-CAN’s UK-wide commitment is amply demonstrated by the fact that one of the Hub’s six founding partners is from Northern Ireland. Queen’s University Belfast (QUB) bring a wealth of expertise, both individually in DATA-CAN’s scientific lead – Prof Mark Lawler, QUB’s Professor of Digital Health and Pro-Vice-Chancellor. As well as through their high-quality programmes in cancer genomics, cancer epidemiology, digital pathology and artificial intelligence.

DATA-CAN’s ambitions are to expand and, over recent months, it has been developing its relationships with both Scotland and Wales to enhance the UK-wide aspects of our hub. Northern Ireland has already made significant contributions to the work of DATA-CAN, providing real-time cancer referral and treatment data from all five hospital trusts in Northern Ireland which gained international attention and has influenced both cancer policy and service delivery.

In Wales, the universities of Swansea and Cardiff both bring significant data science capability and learning through the Population Data Science Group at Swansea University and Cardiff’s Data Science Academy. A recent workshop with representatives of both of these institutions further developed our plans to collaborate on health data research in the following four important areas:

  1. Discrete projects using real-time health data to help health services identify specific challenges and to respond to events such as COVID-19, and the impact of cancer comorbidities on cancer patients and services during the pandemic
  2. Making cancer data flow more freely across the UK, particularly through initiatives such as Swansea University’s Secure Anonymised Information Linkage (SAIL) and Secure eResearch Platform (SeRP)
  3. Co-developing data models and governance to work seamlessly across different healthcare and academic organisations  
  4. Linking genomics data to support genomic medicine and its contribution to enhanced cancer care.

Through this collaboration, we are aiming to see a demonstrable improvement in data access as well as the development of wider research engagements and funding opportunities with our Welsh partners.

We are also working closely with the University of Edinburgh’s Cancer Research Centre who are leaders in health data research, health outcomes and value-based pricing. They too will be contributing to DATA-CAN’s Real-Time Data Network with aggregated cancer referral and treatment data from the hospitals in the Lothian region.

Dr Charlie Davie, Director of DATA-CAN, said, “If we are going to truly make a difference to unlock the power of health data to improve cancer patient outcomes, it is vital that we work across the entirety of the UK. Our partners in Northern Ireland, Scotland, Wales and England all bring a wealth of expertise and experience which strengthens DATA-CAN and helps to make it a rich and diverse data hub.”

Prof Ronan Lyons, Professor of Public Health at Swansea University and HDRUK Research Director said, “We are delighted that Wales is joining the DATA-CAN family and bringing to the table the very rich data held on the population of Wales through the Secure Anonymised Information Linkage (SAIL) databank. Our academic, NHS Wales and Public Health Wales partnership will contribute to research discoveries made by DATA-CAN and speed up the realisation of the resulting benefits for the population of Wales.”

Prof Mark Lawler, DATA-CAN’s scientific lead said, “I am delighted that we are taking a UK wide approach to cancer intelligence and its use to underpin better outcomes for patients. Cancer does not respect political borders, neither should we. Neither, unfortunately does COVID-19, and it is critical that we deploy linked up real time data from across the UK as a unique resource  to mitigate the impact of  COVID-19 on cancer patients.”

Margaret Grayson, member of DATA-CAN Patient and Public Involvement and Engagement Group and Chair of the Northern Ireland Cancer Research Consumer Forum, said, “Patient and public representation is at the heart of DATA-CAN and our diverse PPIE Group are active participants in decision making. By working together, across the UK, we are helping to make sure that health data is used responsibly and that the benefits of improved access to data for researchers are returned to the NHS and wider community.”