How data is used

The data we collect on cancer, rare diseases and congenital anomalies is used in a variety of ways.  We analyse it and publish reports, but it is also used by others to improve the public’s health.

Find out more about our publications here. 

The information we collect shows how many people in England have cancer, a rare disease or congenital anomaly. The data also shows how well treatments are working, which means it can be used to improve patient care across the country.  

The patient data we collect helps us and researchers to: 

Understand these diseases

Data helps us to understand how many how many people have cancer, congenital anomalies and rare diseases and who is at most risk of developing these diseases.

Improve diagnosis

Data helps us to explore how and where people are diagnosed. We also use data to monitor and improve screening programmes.

Plan NHS Services 

Data helps us to discover how many people have different types of cancer and rare diseases. We use this information to improve how patients are treated after diagnosis.

Improve treatment

Data helps us to understand how different treatment affect patient outcomes and how treatments vary between hospitals.

Evaluate policy

Data helps us to compare survival rates and outcomes with other countries and monitor the impact of efforts to diagnose diseases earlier.

Improve genetic counselling

Data helps us to discover new gene mutations that cause cancer and rare diseases. This information is used by the NHS to provide accurate genetic counselling and give extra care to those at risk. 

Read our data stories and listen to our webinars to find out how we use patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies. 

How is my data used by others?

As well as using the data for our own research, we often share information with other organisations. These include The Office for National Statistics and The National Institute for Health and Care Excellence. The data we share with other organisations is usually de-personalised, meaning it does not contain sensitive information like your name or date of birth. Find out more about how we keep data safe here.

Doctors and clinical teams can access anonymous patient data so they can see what treatments work well and compare their performance with other regions.     

The general public can also see key statistics from our data. For example, the Get Data Out programme shows information on 13 different cancers. This can help patients, charities and the public better understand these cancers and how many people are being diagnosed.  


Another way that data is shared is in a research partnership. We partner with charities, academics and the NHS to carry out research in cancer, rare diseases and congenital anomalies. This helps us learn more about these diseases and informs clinical practice and treatments.

The people we work with are also highly trained in information governance and follow strict rules to make sure patient information is kept safe.

Find out more about the partners we work with.

Case study: NDRS and NHS Digital Partnership

We manage many different datasets that hold information on cancer, rare diseases and congenital anomalies. These can be linked to datasets held by the NHS to have a greater impact.

Our analysts are working with NHS Digital to securely link NDRS cancer data with NHS Digital datasets. This helps the NHS to understand the impact of COVID-19 on the healthcare system. With this information the NHS can plan cancer services that have been affected by COVID-19.

The partnership answers questions such as: 

  • how has cancer management changed in response to the pandemic?  
  • what are the reasons for changes in the management of individual patients?
  • what effect do these changes have on patient outcomes?
  • what are the risks of COVID-19 infection and death for patients having cancer treatment during the pandemic?

We also worked with NHS Digital to produce The Shielded Patient List. The Shielded Patient List identifies individuals who are at high risk if they tested positive for COVID-19. This helps these individuals receive the right advice about extra precautions they may need to take. 

You can read more about the Shielded Patient List here.

Web page last updated: August 2021