Our work

The data journey

A person’s healthcare journey is the source of the data:

Step 1. Patient data is created and collected by their NHS healthcare team. We support hospitals to code and collate the data.

Step 2. Data is sent to specialist NDRS staff who collate and quality-assure the data at secure sites across England.

Step 3. Data is put into a secure central system where it can be linked with data sources from other organisations.

Step 4. The data is then used by our analysts, researchers, charity organisations, NHS policy makers and commissioners.

Step 5. Data is used to inform and improve the diagnosis and treatment of patients.

You can see an infographic of the cancer data journey here.

How and why is patient data shared?

We share anonymous data with the Office for National Statistics (ONS) so that they can publish national statistics showing cancer survival rates.

We give doctors access to anonymous patient data so they can see what treatments work well. They can also compare their performance with other clinical teams across the country.

We partner with charities and academics to carry out research on cancer, rare diseases and congenital anomalies. This helps us learn more about these diseases and informs clinical practice and treatments.

To see some examples of how the NDRS uses patient data, you can read our data stories or watch our webinar recordings.

Webpage last updated: August 2021