DATA-CAN - Our Hub for Cancer

About DATA-CAN

• How DATA-CAN operates

  DATA-CAN is the UK’s Health Data Research Hub for Cancer. DATA-CAN’s vision is to unlock the power of health data to improve cancer care by:

  • Making high-quality health data more accessible for cancer researchers, clinicians and other health professionals via the Health Data Research Innovation Gateway
  • Connecting data from across the UK and making it easier to find and use, facilitating research into new diagnostics, treatments and improvements in care and giving patients faster access to clinical trials
  • Collecting and using real-time cancer data to respond to the effects of the COVID-19 pandemic and develop informed solutions to help save lives in the long term
  • Working with patients, the public and health professionals to make sure that data is used transparently and responsibly, and that the benefits are returned to the NHS and the wider UK community.

  Now hosted by The University of Leeds and Leeds Teaching Hospitals NHS Trust, DATA-CAN is a unique partnership of NHS organisations, patients, charities, academia and industry working across all four nations of the United Kingdom. Our founding partners are:

  Genomics England, IQVIA, Queens University Belfast, The Leeds Teaching Hospitals NHS Trust, UCLPartners, University of Leeds.

  The University of Exeter, The University of Edinburgh, and NHS Lothian joined DATA-CAN as Associate Partners in 2021. Swansea University, represented by Population Data Science at Swansea University Medical School, joined as an Associate Partner in 2022.

  DATA-CAN works in partnership with data custodians in universities, charities, industry and NHS organisations to make high quality health data more accessible for cancer researchers, clinicians and other health professionals.

• Who DATA-CAN works with:
  • Data controllers and custodians
  • Researchers and clinicians
  • Life sciences companies
  • Patients and the public

  By working together, we are able to ensure that health data is used responsibly and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community.

• How DATA-CAN benefits patients and the public

  DATA-CAN’s core principle is that patients are active participants and leaders in all that we do. We ensure this by:

  • Having an engaged patient and public involvement and engagement group to represent our national ambition
  • Giving patients influence across DATA-CAN decision making processes and as voting members of the board
  • Engaging with, and representing, the diverse cancer population of the UK
  • Engaging with existing patient advocacy champions
  • Recruiting patient and public participants in an open manner
  • Having a patient advocate/citizen lead on every DATA-CAN project
  • Developing and providing training for PPIE group members with partner organisations.

  We operate by the principles of transparency developed by the national patient group useMYdata. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN.