Patient data was used by the brainstrust to show that non-malignant brain tumours are not harmless
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 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.
Why was this work needed?
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.
What are the benefits?
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.
What type of data was involved?
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.
What was the legal basis for accessing this data?
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 is granted 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?
brainstrust authored its report using data collected, processed and analysed by NCRAS within Public Health England (PHE).
Where can I go for more information?
This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Cancer Registration and Analysis Service, which is part of Public Health England (PHE).