The intelligence being provided

And the difference it's making

The patient data we collect is helping improve diagnosis and treatment of cancer, rare diseases and congenital anomalies.

This data 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 treatments 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. Find out about how we support genetic counselling here.

We provide anonymous data to organisations like The Office for National Statistics and The National Institute for Health and Care Excellence. We work with charities and academic institutions to carry out research projects.

We are also working with The Cancer Vanguard sites, which are The Christie NHS Foundation Trust, The Royal Marsden NHS Foundation Trust, and University College London Hospitals NHS Foundation Trust to find new ways to visualise a patient’s care pathway. This will help doctors see what care their patient has received.

You can learn more about the different partners we work with here.

To receive regular updates about our work, you can sign up to our monthly newsletter here.

What is the impact of patient data?

If you would like to see some examples of how patient data has had a real-life impact, please see our data stories and watch our webinar recordings.

Webpage last updated: August 2021