In Brain News, Brain Tumour Data, Charity News, Press Releases, Research News

brain tumour data logoUntil recently, up to date, accurate population level brain tumour data has been hard to get. brainstrust and Public Health England’s National Cancer Registration Service (NCRAS) have been working to solve this problem. The ‘Get Data Out’ project sees the regular release of new brain tumour data. This data will help us all to understand the impact of brain tumours at a population level.

This work will see regular publication of anonymised brain tumour data on:

  • Brain Tumour Incidence
  • Survival
  • Brain tumour treatment
  • Routes to diagnosis

This is the vanguard to a wider piece of work to establish ways of producing regular, anonymised data on rarer cancers. With the systems now established, and patient anonymity guaranteed the stage is set for unprecedented access to meaningful population level data on rarer cancers.

Why this is important

The policy context for this piece of work is also significant. At September’s Britain Against Cancer conference the All Party Parliamentary Group (APPG) on Cancer published its inquiry ‘Progress of the England Cancer Strategy: Delivering outcomes by 2020?’. Here the APPG is “calling for NHS England and Public Health England to increase data transparency by making more of it available to the public”. It also says that “this must include rare and less common cancers, all aspects of the patient pathway, and national and local data.”

The ‘Get Data Out’ project is a step in the right direction.

See the brain tumour data

Next steps

There is much yet to be done. This initial release of data marks a watershed as Public Health England is able to ensure safe and secure policies, processes and procedures are in place that meet the requirements of the law and best practice to ensure that patient data (your data) is shared in a way that does not compromise anonymity. However, data on its own does not tell a story. We will be working to bring meaningful narrative to this data, with the support of clinical, patient and public health partners in the coming weeks, months and years. We will also be working to make the data visually engaging, accessible and meaningful to the general public.

The future for understanding brain tumours is bright

Will Jones, brainstrust’s Chief Executive says, “The future is bright as we look forward to the next stages of this work. We are building on solid foundations to support Public Health England as they release more brain tumour data that is interesting and useful to the community.

The conversation will move on from traditional measures that focus on incidence and survival, to help us evidence at a population level the struggle, nationwide, to ensure that there is parity of care and that life is as good as it can be when you have a brain tumour in the family. We are delighted to have been able to support Public Health England in this work.”

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