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Brain tumours kill more children and adults under the age of 40 than any other cancer

Our report on PHE Patient Data Conference - 20-21 June 2018

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The Cancer Services Data and Outcomes Conference in Manchester, organised by Public Health England, was a good mix of different views on the need for cancer data and its potential impact on outcomes for patients and clinicians.

I went to talks on early diagnosis and patient experience. As a patient myself, talking about patient experience is extremely important as everyone’s journey is unique. We heard that not enough patients (52%) are asked about their fears and worries by their consultant or talked to about research options. There is also a huge inequality of access to cancer services.

With regard to brain tumour patients (particularly patients with malignant tumours), they often report a less positive experience of care than other patients. This may be influenced by the fact that most malignant brain tumours are diagnosed in A&E departments with many early symptoms proving difficult for GP’s to diagnose.

I attended workshops on rare and less common cancers and cancers in children and young adults. At the forefront of these talks was our Member Charity brainstrust who are also raising awareness of non-malignant brain tumours through a recently released report which highlights that this devastating condition doesn’t always receive the appropriate level of attention. The shocking truth is that over 1 in 10 people will die within a year of their non-malignant diagnosis.

Something that came through loud and clear was that “data saves lives”. Jem Rashbass, National Director for Disease Registration and Cancer Analysis argued that the UK has one of the largest datasets in the world. The goal is to use them efficiently so they fully benefit patients.

According to Nicola Perrin who set up Understanding Patient Data, 97% of brain tumour patients want to share their data. She further explained how the combination of good data gathering and artificial intelligence could improve diagnosis machine learning and deep learning. This in turn could allow doctors to spend more time with patients.

The conference was about cancer in general and was an opportunity for clinicians and researchers to share their work across all cancer sites. From my perspective, what should never be forgotten is the impact on, and the perspective of, the patient.

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