Non malignant brain tumours data story

A brain tumour charity called 'brainstrust – the brain cancer people' used anonymous patient data published by the National Cancer Registration and Analysis Service (NCRAS) to campaign for better care for those affected by non-malignant brain tumours (NMBTs). Non malignant tumours are a generally less aggressive tumour and slower growing and are often referred to as ‘benign’ or ‘low grade’ tumours;  terms which may imply they do not cause harm. But NMBTs can be harmful because they can compress the brain. Many patients suffer serious changes in their quality of life and in some instances, they can be terminal.  

Exploring the data from NCRAS, 'brainstrust' saw that 10% of people diagnosed with an NMBT die within the first year after being diagnosed. The charity published a report which you can read here calling for extra support for this group and to raise awareness that these non-malignant tumours can be deadly.  Patients with these tumours are not offered the same support, such as from an occupational therapist or a financial advisor, as others with malignant brain tumours. The 'brainstrust' report appeals to the clinical community to stop using the word ‘benign’ to describe these tumours and change the perception that this word implies because they can be fatal and often have serious effects on a person’s quality of life.   

Before NCRAS published this data, there was very little information available about brain tumours in England. With this data now in the public domain, charities, researchers and patients themselves can use it to understand more about the disease and know where to improve care to save lives. Without patient data, we would not know that 10% of people affected by NMBTs die soon after diagnosis.

Patient data has helped 'brainstrust' understand what happens to patients diagnosed with non malignant brain tumours. The data shows that non malignant brain tumours can be deadly, and this evidence is helping the charity campaign to change people’s perception that these tumours might be harmless. 'brainstrust' is also using the data to campaign for these patients to be allowed the same support as those with malignant tumours.

'brainstrust' used publicly available data from NCRAS to create its report. 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.

'brainstrust' used anonymous data published by NCRAS. NCRAS has legal permission to collect patient level data and use it for research to protect the health of the population. This permission was granted to NCRAS under Section 251 of the NHS Act 2006, whilst it was still part of Public Health England (PHE). NCRAS regularly analyses and releases anonymous data for public use.

'brainstrust' authored its report using data collected, processed and analysed by NCRAS was part of Public Health England (PHE) at the time.