Patient data was used by Target Ovarian Cancer to raise awareness that ovarian cancer is often diagnosed late

What happened?

Target Ovarian Cancer used anonymous patient data collected, analysed and published by the National Cancer Registration and Analysis Service (NCRAS) to highlight the challenge posed by late diagnosis. In the data they saw that 20% of women with ovarian cancer have neither surgery, chemotherapy or radiotherapy and suggested that this could be because by the time they are diagnosed women are too unwell to start treatment. The charity also found that over a quarter of women with ovarian cancer are diagnosed as an emergency (for example in A&E) which can mean the cancer is diagnosed at a late stage. The charity published a data briefing and an article sharing the data from NCRAS to improve awareness of ovarian cancer with the public.    

Why was this work needed?

Without patient data we would not know that such a large proportion of patients are diagnosed as an emergency or that a large proportion are not treated with radiotherapy, chemotherapy or surgery. Using patient data to improve our understanding of cancer is important to know how healthcare can be improved to save lives.

What are the benefits?

Patient data from NCRAS has helped Target Ovarian Cancer by providing data on how many patients are diagnosed with ovarian cancer, how they are diagnosed, and if they have treatment. This data will help the charity, and the NHS too, to know if their work to diagnose ovarian cancer earlier is succeeding. Using patient data helps make improvements in care to save lives.

What type of data was involved?

Target Ovarian Cancer used publicly available data from NCRAS to produce the data briefing. The data comes from the ‘Get Data Out’ programme which publishes routine anonymous statistics on incidence, treatment, survival and routes to diagnosis for small groups of cancer patients.

What was the legal basis for accessing this data?

Target Ovarian Cancer used publicly available, anonymous data from NCRAS.  NCRAS has legal permission to collect patient data under Section 251 of the NHS Act 2006. NCRAS regularly analyses and releases anonymous data for public use.

Who funded and collaborated on this work?

Target Ovarian Cancer authored their report and briefing using data collected, processed and analysed by NCRAS within Public Health England (PHE).

Where can I go for more information?

Cancer statistics from the Get Data Out programme in NCRAS

Data briefing on ovarian cancer from Target Ovarian Cancer

New data shows ovarian cancer often spotted too late for treatment

Gynaecological cancer briefings from NCRAS

What cancer statistics are available and where can I find them?

Data for this study is based on patient-level data collected by the NHS, as part of the care and support of cancer patients. The data is collated, maintained and quality assured by the National Cancer Registration and Analysis Service which is part of Public Health England (PHE).