What does the Hub do?

One in two people will get cancer during their lifetime. Every year, almost 400,000 new cases are diagnosed in the UK and cancer costs the NHS £7 billion annually. Research has shown that using health data more effectively can help to drive the development of new cancer treatments, therapies and diagnostic services and improve cancer survival rates.

Health data collected by the NHS and other organisations is not always quick and easy for researchers to find, access and analyse. 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. The aim is to make it easier to conduct research into new treatments, identify opportunities for earlier diagnosis, give patients faster access to clinical trials and create new investment in UK healthcare.

How does the Hub operate?

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.

Hosted by UCLPartners, DATA-CAN: The Health Data Research Hub for Cancer 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.

Who is the Hub aimed at?

DATA-CAN: The Health Data Research Hub for Cancer 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 we work with:

  • Data controllers and custodians – these are normally universities, charities, industry and NHS organisations and they own the health datasets and control how the data is used. DATA-CAN supports data controllers by helping to make the safe sharing of cancer data easier.
  • Researchers and clinicians – DATA-CAN makes it faster and easier for researchers to use health data from across the NHS securely to drive innovation and the development of new cancer treatments, therapies and diagnostic services.
  • Life sciences companies – the UK’s life sciences industry brings important tools and services to support our work. DATA-CAN is giving industry an opportunity to use their skills and expertise to develop solutions to data challenges in partnership with the NHS and conduct the research needed to develop new treatments.
  • Patients and the public – patients and the public are at the heart of DATA-CAN. They help to make sure that health data is used transparently and responsibly and that the benefits are returned to the NHS and the wider UK community.

How does the Hub benefit 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.

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.

Hub Collection: https://web.www.healthdatagateway.org/collection/5761466520638547

Website: www.data-can.org.uk/patients   

Twitter:  https://twitter.com/data_can_hub

Linkedin: https://www.linkedin.com/company/data-can-the-health-data-research-hub-for-cancer/