How data is used

The benefits of data driven healthcare

The National Cancer Registration Service and the data it holds, is making a significant contribution to the way that cancer is diagnosed and treated.  The Cancer Registry can see the numbers and types of cancers across England, how this varies and is changing over time – this helps the NHS to plan cancer services. The data it gathers is also helping to measure the effectiveness of drugs and, in some cases, can help predict who might get the disease because of their family history. The more data that is collected, the more people that the Cancer Registry can help in the future.

As well as using the data to conduct our own research we often share information with organisations like The Office for National Statistics and The National Institute for Health and Care Excellence. The Cancer Registry works with all the main UK cancer charities, many of whom fund their own research projects.

Because the information held by the National Cancer Registration Service is personal and confidential our information governance experts ensure data is only released in the correct way to appropriate individuals and organisations, and only when proper, proven safe-guards are in place.  These experts are part of Public Health England’s Office for Data Release. No data that can directly identify you is ever released without your permission, or unless the organisation requesting it can prove that they have been given legal permission for obtaining the information and can show evidence of adequate data security. It is never sold. To find out more about who can access your data, and in what form or level of detail, click here

We currently provide data to the following organisations for specific research projects they are undertaking:

  • NHS England
  • Cancer Research UK
  • Macmillan Cancer Support
  • Teenage Cancer Trust
  • National Cancer Research Institute
  • Association of British Pharmaceutical Industry (ABPI)
  • London Cancer Alliance
  • Health Data Insight Community Interest Company
  • Royal College of Physicians
  • Royal College of Surgeons
  • Transforming Cancer Services London

You can find out more about these research projects here

Linking datasets together to help COVID-19 analysis and research

The NDRS manages many different types of datasets about cancer and rare diseases and can link to datasets in the NHS to widen our research ability. We are experts on linking datasets together and we also have a dedicated Data Liaison team who help to troubleshoot data issues and improve data quality. Skilled NDRS analysts are working with NHS Digital (NHSD) to advise on safely and securely linking NDRS cancer data with NHSD datasets to understand the effects of COVID-19 on the public and health care system.

As part of this joint programme of work, cancer data from NDRS will be shared with NHSD and linked with NHSD datasets at patient level.  This will enable key COVID-19 questions to be answered on immediate priorities for service planning and improving our understanding, and mitigation, of the impact of COVID-19 on cancer services and patient outcomes.  The collaboration will answer questions against the following themes:

  • How is cancer management being modified in response to the pandemic?
  • What are the reasons for changes in the management of individual patients?
  • What effect will these changes have on patient outcomes?
  • What are the risks of COVID-19 infection and death for patients having cancer treatment during the pandemic?

The Cancer Data and Analytics Advisory Group (CDAAG), which reports to the National Cancer Board, will oversee delivery of this work. CDAAG are responsible for the coordination of analytical requests relating to cancer and COVID-19, advising on which organisations are best placed to address them and ensuring results and resources are shared between members.

NDRS cancer data will also be used in NHSD’s Cancer Trusted Research Environment (TRE) service for England, which provides approved researchers with access to essential linked, de-identified health data to quickly answer COVID-19 related research questions.  The Cancer TRE can be accessed by a range of stakeholder groups and organisations.  NHSD is working in partnership with the PHE Cancer Stakeholder Coordination Group and Health Data Research UK to define the common requirements for research on cancer and COVID-19.  Our shared objective is to provide rapid, safe and trustworthy access to data in a transparent way that accelerates the pace of quality research on cancer outcomes, playing a leading role in the UK’s COVID-19 response. Applications to access the Cancer TRE will be managed through the NHSD Data Access Request Service (DARS).

Using cancer and rare disease data to enhance the Shielded Patient List in response to COVID-19

The Shielded Patient List (SPL) is produced by NHS Digital (NHSD) and identifies individuals who are at high risk of developing complications from COVID-19. It is based on disease groups outlined by the Chief Medical Officer (CMO) for England, including cancer and rare diseases. It aims to identify people who are at high risk of complications from COVID-19 so they can receive the right advice about extra precautions they may need to take.  Skilled NDRS analysts are working with NHSD to advise on safely and securely incorporating NDRS cancer and rare disease data within the SPL production, to refine the rulesets and therefore better identify those at higher risk.

NHSD will continue to oversee the production of the SPL. You can read more about the SPL here