World Cancer Day 2020. How is data helping cancer?

World Cancer Day takes place every year on February 4 to inspire action around the globe to create a future without cancer. Started in 2000 by the Union for International Cancer Control, the day aims to raise awareness of cancer, improve education and encourage global action to save millions of preventable deaths.

To play our part in raising awareness on this day, we want to celebrate the role patient data plays in preventing cancer and improving care for those affected by this disease.

NCRAS collects patient data from the NHS about everyone diagnosed with cancer, and then uses this data to understand more about the disease and improve how cancer is diagnosed and treated in the NHS. Patient data is vital to improving cancer care and has played a significant role in England for many years.  

Using stories to explain how cancer data is being used to improve care

Over the last 6 months we have developed a series of Cancer Data Stories that explain to patients and the public how data is being used to improve cancer care. These stories form part of a wider effort to improve public understanding of cancer registration and the patient’s right to opt out of having their data collected if they wish.

Our Cancer Data Stories have so far covered 8 examples of how NCRAS and our partner organisations have been using patient data. One of the most notable stories describes how data is being used to identify women at increased risk of breast cancer and make sure they get the extra screening they need to catch any potential disease early. Another story discusses how data from NCRAS and clinical trials was used to develop a tool which helps doctors and breast cancer patients find the best treatment plan based on what has worked well for similar women in the past.

As well as using data in very practical ways, like developing clinical decision-making tools, patient data also contributes to traditional scientific research. This research helps the clinical community understand more about the disease and provides evidence to help the NHS make necessary improvements in care.  Data was used in one study to measure the benefits of a new treatment for lung cancer, and in another to understand the risk of suicide after a cancer diagnosis.

How else has data helped tackle cancer?

Beyond the data stories already published, there are also many other ways that data has had an impact on cancer care.  NCRAS holds the largest and richest collection of data on cancer in the world and the quality and range of this data has expanded dramatically over the last several years.  NCRAS collects data on treatment, such as chemotherapy and radiotherapy which is not available routinely in many countries and was also one of the first cancer registries to routinely collect genetic data about cancers. 

Possibly one of the greatest achievements that has come from routinely collecting data on cancer is understanding how and where people are being diagnosed. The award-winning Routes to Diagnosis study was the first-time pathways to a cancer diagnosis were understood across the whole of England. The study also looked at how survival was affected by the different routes to diagnosis. The clinical and research communities were shocked to find out that such a large proportion of patients were being diagnosed as an emergency. This discovery led to many significant changes in the commissioning of cancer services to make sure people were being diagnosed as quickly as possible to improve survival and save lives.

Other achievements include the improvement in collection and recording of the stage of the cancer tumour at the point of diagnosis. This is important because having this data allows the NHS and the government to measure how well efforts to diagnose cancer earlier are working. The NHS Long Term Plan sets out an ambition to diagnose 75% of patients at an early stage and the data in NCRAS will help to monitor this. 

The collection of treatment data to understand radiotherapy and chemotherapy usage has also helped to improve cancer care by helping to make decisions on the Cancer Drugs Fund and to help the NHS to roll out treatment machines like Linear Accelerators.

How is data used to prevent cancer?

Across Public Health England there is also a lot of work to prevent potential cases of cancer by tackling risk factors that can lead to cancer like smoking, alcohol consumption and obesity. PHE collect data to understand tobacco usage and can use this to support groups of people to quit.

PHE also collects data on cancer screening programmes and uses it make sure screening is as safe as possible and to understand where screening update might be low. And PHE uses data to understand the impact of the awareness campaigns, Be Clear On Cancer, which aim to raise awareness of cancer symptoms and encourage people to visit their GP.  

Data saves lives

Data is becoming more and more vital in the fight against diseases, and cancer is no exception. The work of NCRAS and Public Health England has had a big impact on improving cancer care, from understanding how and where patients are diagnosed to helping patients choose the best treatment. Only by building a big picture of cancer by routinely collecting patient data can we understand how best to improve care.