In Research News

Tessa JowellThere has been some super coverage about brain cancer on Radio 4’s Today progamme this morning, inspired largely by Nick Robinson and Tessa Jowell’s own experiences and personal challenges with cancer. Both presenters have been incredibly candid, and brave, in recounting their experiences.

http://www.bbc.co.uk/news/av/health-42786413/former-labour-minister-opens-up-about-being-diagnosed-with-brain-cancer

Susan Short, Professor of Clinical Oncology and Neuro-Oncology (Leeds), spoke about the need for combination therapies and treatments – so mixing things up with radiotherapy, chemotherapy and immunotherapy. Dr Colin Watts, Clinician Scientist & Hon Consultant Neurosurgeon (Cambridge), explored the impact that 5ALA has had on brain tumour surgery. And then there was discussion about adaptive trial design, so that everyone who is living with a brain tumour can be entered into a trial. And the need for good data and global data collection and people talking across continents. Finally the programme talked about patient experience. Four strong themes!

But as ever there is always a sense of impatience that things aren’t moving quickly enough. It’s always better to get it right than quick. And there truly is progress on all of these fronts – there is a stimulating environment out there. So for the next four days we’ll be sharing the view about each of these four themes.

Here in the first of a four part reflection on the programme, Helen Bulbeck, brainstrust’s Director of Services and Policy gives us some more detail on the context and her views on what was shared.

Part 1: adaptive trial design and research funding

We know today that big global research funders are looking for adaptive clinical trials, and that applications that meet the stringent criteria of larger funders are sadly lacking in the brain tumour community, and as a result, so are clinical trials for our patients. Every day we hear frustration from our community that there are not appropriate trials for them. Many fruitless hours are lost searching for brain tumour trials that don’t exist. And if a brain tumour trial is found, then people often fall outside of recruitment criteria because they have had treatment or are at recurrence. It is a hopeless situation and the frustration is felt across all involved – patients, carers, families, researchers, and doctors. To see the trials that might be available you can visit the brain tumour hub – www.braintumourhub.org.

The traditional model of trials hasn’t worked for people with a brain tumour. It’s time for something new.

brainstrust is working with investigators looking at adaptive trial design and ensuring that applications are top notch. Clinical trials are a bit like building towers – do you build one tower and put all your efforts into one building block. What happens if it falls down? Or do you build multiple, smaller towers, adding blocks as you go along, involving more people, mitigating risk and influencing more? This is the point we are at with trial design. The traditional model of trials hasn’t worked. It’s time for something new. Adaptive trial design shortens the time needed to answer key research questions, reduces the number of patients needed for evaluation, gives opportunity for more patients to be signed up for a trial, can answer more than one research question simultaneously and improves the quality of decision-making.

The barrier for funding research into brain tumours is the lack of quality.

There’s a lot of noise around lack of funding for research into brain cancer. On the one hand we hear that it’s the poor relation, in comparison to other cancers – true. We hear too that investigators and clinicians say that the barrier for funding research into brain tumours is the lack of quality, collaborative, innovative research applications. CRUK is funding two centres of excellence to a tune of £25 million and is holding an international conference in May to unite the brightest minds in cancer research to discuss and debate some of the greatest issues in the field. This, along with new approaches to designing clinical trials, are a step in the right direction. The outcome? An increase in overall success rates. For everyone.

 And for the bigger picture on brain tumour research and patient involvment, follow this link: https://www.brainstrust.org.uk/clinical-research.php

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php