In Brain Tumour Data, Charity News, Research News

As the landscape of cancer data becomes increasingly complex—and increasingly commercial—the voice of patients, your voice, must be at the centre of every development. Patient data is the backbone of research: it helps us understand how brain tumours behave,
how treatments perform in the real world, and how people experience care across the system. It’s driving advances in personalised medicine, shaping clinical trials, and informing the allocation of resources. Without it, progress stalls. But if this data is to be meaningful—and used ethically and effectively—it must be shaped by those it represents.
Crucially, people have differing needs, wishes and values when it comes to how their data is collected, shared and used—and these differences must be respected if we are to build a truly patient-centred system.

“We know there isn’t a singular position taken by patients and caregivers on the topic of data privacy; some want to choose case by case where their data is used in research, and some want to only have to say yes once and know that it’s easily accessible to relevant studies. This is important nuance to consider when making large-scale decisions, and another reason that patient involvement in decision making is crucial to individual projects.” – Adam Thomson, Involvement Officer, brainstrust .

brainstrust’s leadership in this space began in 2012, when we partnered with the NCIN and Public Health England (as was) to ensure that brain tumour patients had a say in how their data was collected, interpreted and applied. This early work laid the foundations for more transparent, patient-inclusive data practices and helped establish the principle that lived experience must guide research. This commitment has deepened over time. We’ve worked with NDRS and Cancer Research UK to co-develop the Cancer Patient Information Portal – a tool designed to give patients greater visibility and control over their registry held data.

Through our collaboration on NHS England’s Get Data Out programme, we’ve helped ensure that high quality, disease specific cancer data—particularly for less common cancers like brain tumours, is made accessible and useful to researchers, clinicians and, crucially, patients.

By unlocking data that had previously been buried in aggregated statistics, Get Data Out gives people living with brain cancer clearer insights into outcomes, treatments, and the state of play in their disease area.

“Our position as a leading authority on patient voice in brain tumour data is rooted in over a decade of working hand-in-hand with the community. We listen first, and act second—whether it’s shaping how data is collected and used, or helping patients and carers navigate a health system that can feel impenetrable.” Helen Bulbeck – Director of Services and Policy, brainstrust.

But the environment is changing. We’re seeing a proliferation of public-private partnerships, and new technologies that offer both promise and peril. Data can drive breakthroughs—but it can also erode trust if patients are not seen as partners.

The path forward demands courage, transparency, and accountability. Most of all, it demands that the people most affected by brain tumours have a seat at the table. brainstrust is committed to making sure they do. Only by embedding the patient voice in every decision can we ensure that brain tumour data drives not just innovation, but better lives. We continue to support the Get Data Out programme – read more here Read more about our work with public-private collaborations like with Flat Iron and the NHS here.

On June 24th in Leeds there is a major National Patient Data Day conference. In anticipation of this event please read Dr Helen Bulbeck’s latest blog on this topic here.  Within the blog she discusses the core principle that must underpin the emerging public/private data management partnerships.

Find out more about the National Disease Registration Service and how your cancer data improves experiences, outcomes and lives – read more here

Cure51 x brainstrust: Join the Rosalind Study (Cancer Survivor Focus Group) – Tues 1st July 2.00pmEvents, Patient & Carer Events

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