Skip to main content

Collecting and keeping patient data safe

Detailed information about how the National Disease Registration Service (NDRS) collects and records data of people with cancer, rare diseases or congenital anomalies.

It’s really important for people who have a brain tumour and the people that are caring for them to see how many other people there are like them and what’s happening to them during the course of their illness. We think it’s a real step forward and certainly gives people who use our services and support a sense that they are not alone.

How we collect and record patient data

Each year we register approximately 500,000 patients diagnosed with a cancer and we collect data on over 1,400 different rare diseases and congenital anomalies.

As part of NHS England, we have a special legal instruction to collect patient data without needing informed consent. This instruction is granted under section 254 of the Health and Social Care Act 2012. 

We collect data from a variety of sources depending on the patient's diagnosis. 

For cancer, we receive data on a monthly basis directly from NHS hospitals. When a patient is diagnosed, the hospital will send information about the type of tumour and when it was diagnosed.

If the patient then starts receiving treatment such as radiotherapy, the radiotherapy department will then send us information about their treatment and how effective it has been.

For congenital anomaly cases, we receive both antenatal and neonatal data from the hospital in various forms such as scan reports, screening results and neonatal notes. We hold information on both the mother and the baby.

For rare diseases, each registration record contains the following information:

  • name and date of birth
  • gender and ethnicity
  • address and NHS number
  • information about the diagnosis and treatment

Data is reviewed and linked by specially trained registration staff to create a patient record.

Read more about how cancer data is processed and collected in the International Journal of Epidemiology’s ‘Data Resource Profile: National Cancer Registration Dataset in England’.

How we use patient data

The data we collect and quality assure is used by our team of analysts and epidemiologists to produce a range of outputs that help improve patient outcomes, including:

The patient data allows our analysts and others working in health to: 

  • have oversight of how many people in England have cancer, a rare disease or a congenital anomaly
  • understand how well treatments are working - to help inform and improve patient care across the country
  • inform direct patient care
  • understand diseases and who is most at risk of developing them
  • improve diagnosis and screening programmes by exploring how and where people are diagnosed
  • improve treatments - by investigating how different treatments affect patient outcomes and how treatments vary between hospitals
  • evaluate policy - by comparing survival rates and outcomes with other countries and monitoring the impact of efforts to diagnose diseases earlier
  • improve genetic testing and counselling - data helps us to discover new gene mutations that cause cancer and rare diseases

For more information on how patient data is used for research and analysis see Our Work.

How long we keep patient data

We start collecting data as soon as a patient is investigated for cancer, a rare disease* or a congenital anomaly. We then follow their treatment for the rest of their life. We do this because we need to see if the disease comes back or if there are any side effects from the treatments they may receive.

It is important that we hold data for at least the lifetime of the patient so that we can look for any long-term trends of the condition and carry out research. For example, some forms of cancer can be inherited. For those families with this genetic risk, long term monitoring is important so they can be offered appropriate screening and treatment.

*We also collect data on individuals with a rare disease retrospectively. For more information on self-registration please email [email protected] 

Find out how NDRS data can be used to support direct patient care.

Find out more about how NDRS has used patient data to identify patients eligible for enhanced breast screening in the BARD project data story.

How we keep patient data safe

The security of patient data is an absolute priority for NDRS. We have legal permission to collect patient data to protect the health of the population under Section 254 of the Health and Social Care Act 2012. Please visit the government legislation website to see the full Health and Social Care Act.

Data about an individual’s health is highly sensitive, and so we take great care over the way it is collected, stored and analysed.

We apply the strongest form of encryption to the patient data we hold. When we collect it, it is sent through a secure NHS-compliant online network. We store it on secure servers. Everyone working with patient data is trained in information governance and follows strict rules to make sure patient information stays safe.

Data security and data sharing

Most of the data that we share is anonymous (meaning the person cannot be identified), but sometimes we can share data that contains personal information.

Researchers (for example at a charity or university) can apply for permission to access patient data that is not anonymous (meaning it contains personal information). 

Data is only shared if the researcher meets all the requirements for accessing patient identifiable data. For example, research ethics approval and data storage and security requirements.

Opting out of disease registration

Patients with a cancer, congenital anomaly or rare disease can opt out of disease registration if they do not want us to hold or use their data.  

Who we share patient data with

Disease registration is crucial to improving patient outcomes. As well as using patient data for our own research and analysis, we often share information with other organisations. The data we share is usually anonymous and it can only be used for health care purposes; our absolute responsibility is to ensure patient confidentiality.

We share data to improve data accuracy and standards

We collaborate and advise through a number of partners, in the UK and internationally. Our partnerships help us to improve the accuracy of data on cancer, rare diseases and congenital anomaly. Read more about our partnerships.

We share data for research to improve treatments

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

We also 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.

How we share data

We make data available for health research purposes through a number of routes including our own research, National Statistics, academic papers, data tools and dashboards. Personally identifiable data is only released where the applicant can demonstrate it is to be used for a health research purpose and there is an appropriate legal basis with safeguards to protect the data once it has been shared. 

Sharing data with the NHS about COVID-19

Shielded Patient List

During the pandemic, we worked with NHS Digital to produce The Shielded Patient List, which 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 on the NHS Digital webpages.

Understanding COVID-19’s impact on cancer services

We are linking NDRS cancer data with other NHS data sets to help the NHS 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.

This can help the NHS answer 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?

Last edited: 26 July 2023 11:44 am