DATA-CAN - Our Hub for Cancer

About DATA-CAN

• DATA-CAN's approach

  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 data to understand the effects of the COVID-19 pandemic on referral diagnosis, treatment, and outcomes of patients with cancer, 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.

• DATA-CAN's services

  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. DATA-CAN offers services to:

  • Data controllers and custodians, to connect health data from across the UK data ecosystem and enable the discovery of new treatments and better care.
  • Researchers and clinicians, to make it faster and easier to bring together and interpret data from across the NHS in a secure way.
  • Life sciences companies, to bring important tools and insights to support our work.

  By working together, in partnership with patients and the public, DATA-CAN ensures 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 their work. They ensure this by:

  • Having an engaged patient and public involvement and engagement group to represent national ambitions
  • 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.

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