Patient data is helping to improve care for breast cancer patients

This October is Breast Cancer Awareness Month, a yearly campaign led by several charities to raise awareness of breast cancer. Every year approximately 55,000 women in the UK are diagnosed with breast cancer, 46,100 of who are diagnosed in England.  This makes breast cancer the UK’s most common cancer.

To play our part in raising the profile of this disease, and to share details of how we are trying to make improvements, we are releasing two new cancer data stories. These stories describe how patient data is making a real impact on improving the care and treatment of women affected by breast cancer.  

Patient data from the past is helping today’s breast cancer patients choose the best treatment

Our first story describes how patient data collected by the National Cancer Registration and Analysis Service (NCRAS) was used to develop an online tool which helps women with breast cancer and their doctors choose a treatment plan.

The tool, called ‘Predict Breast Cancer’, helps women and their doctors decide on a treatment to start after surgery for early invasive breast cancer. Women or their doctors enter details into the tool about themselves and their cancer, such as age at diagnosis, tumour grade, and tumour size. The tool then uses data from similar women in the past to show how well different treatments have worked and how they might improve survival.

The award-winning tool was developed by a team of researchers from the Eastern Cancer Information and Registration Centre (ECRIC) (which is now part of the National Cancer Registration and Analysis Service) in collaboration with the University of Cambridge.

To build the tool, the team analysed patient data collected from women diagnosed with breast cancer as part of the cancer registration process, which is held securely in NCRAS. They also studied the data from several clinical trials which looked at how effective different breast cancer treatments were.  

These two types of data were combined to develop the tool which is now in use in consultations in the NHS today. This shows how important patient data from the past is in helping individuals with breast cancer and their doctors today decide which treatment is best for them.

What the researchers say

Dr Alexandra Freeman, Executive Director of the Winton Centre for Risk & Evidence Communication, who helped to build the tool, has said:

“Deciding what treatment to take is a hard decision. Seeing what happened to other people when they chose their treatments is vital. That’s why tools like ‘Predict’, that turns data shared by past patients to answer, ‘what might happen if…?’ are so useful to doctors and patients the world over.”

This is an excellent example of how patient data stored securely in NCRAS is used to improve care and survival rates for women affected by breast cancer.  Our knowledge of breast cancer and our ability to improve care for future women continues to improve thanks to rich sources of patient data.

Patient data is helping to catch breast cancer early for those at high risk

‘Predict’ is only one example where patient data has made an important impact on breast cancer care. Our second cancer data story looks at how data from NCRAS is helping to identify women who are at higher risk of developing breast cancer and making sure these women are offered breast cancer screening as early as possible.

Women under the age of 36 who receive radiotherapy involving breast tissue as part of treatment for Hodgkin lymphoma, non-Hodgkin lymphoma and sometimes other cancers are more at risk of developing breast cancer in later years. National guidelines that have been in place since 2003 suggest that these women should be offered screenings for breast cancer from the age of 30 or 8 years after receiving radiotherapy, whichever occurs later.

Despite this, research showed that many of these women were not being screened for a variety of reasons and so were losing out on the chance to detect cancer early when recovery rates are highest.  

It was clear that things needed to be different, so a group of doctors, patients and colleagues at PHE decided to create a list of women across England who are at risk of developing breast cancer because of earlier radiotherapy treatment to breast tissue.  This secure list is known as the Breast screening After Radiotherapy Dataset (BARD) and is made by identifying eligible women from cancer registry data in NCRAS. 

Approximately 6000 women under 36 who received radiotherapy for Hodgkin and Non-Hodgkin lymphoma are included in the BARD dataset.  BARD is then used as part of a new system that generates breast screening appointments for these at-risk women when needed and sends out invitations and additional information to encourage them to attend screenings. 

This will hopefully prevent many higher-risk women being diagnosed late. The use of patient data like this is important because delays in diagnosis lead to limited treatment options and reduced survival because the cancer has become more advanced.

What the researchers say

Professor John Radford, a researcher and oncologist from the University of Manchester and The Christie NHS Foundation Trust, and BARD chair, has said:

“We have set up BARD so that women at increased risk of breast cancer following radiotherapy can be sure they will receive an appointment for screening at the right time. BARD would not have been possible without the information provided by the cancer registry in NCRAS and the support of colleagues at Public Health England and radiotherapy centres across the country.”

What the patients say

A patient member of the BARD group, has said:

“My radiotherapy treatment for lymphoma and subsequent breast cancer were all pre-BARD. My breast cancer was not detected early and this has been costly in terms of my life experience. I have a dear friend who is now fortunate to be part of the BARD scheme. Knowing that my friend’s life and health in terms of early detection of breast cancer following radiotherapy is taken care of by BARD is cause for great personal relief. I think this is an incredible opportunity to optimise life and health in the longer term for people who have survived an earlier cancer”.

By using the patient data held securely in NCRAS, we can continue to identify who is at risk for developing breast cancer and make sure these women are offered breast cancer screening when needed. This can help detect cancer earlier and help save lives.

#datasavelives #NCRAS #cancerdata

Sources

1 Cancer registration statistics, England: 2017

2 http://www.ncin.org.uk/view?rid=3579

3 https://www.cancerdata.nhs.uk/routestodiagnosis

4 https://www.cancerdata.nhs.uk/treatments

5 Cancer survival in England: adult, stage at diagnosis and childhood – patients followed up to 2018

Where can I go for more information?

Predict Breast Cancer

Predict: a new UK prognostic model that predicts survival following surgery for invasive breast cancer

Winton Centre for Risk & Evidence Communication 

https://phescreening.blog.gov.uk/2019/07/26/breast-screening-after-radiotherapy-bard-new-dataset/

https://www.christie.nhs.uk/services/i-to-q/lymphoma/lymphoma-research/bard/

chn-tr.BARD@nhs.net