In Research News

Our Patient Research Involvement Movement (PRIME) started in April 2021 with the aim of providing and improving the standard of patient and public involvement and engagement (PPIE) in brain tumour clinical research.

PPIE means utilising the insight and knowledge of the patient and caregiver community in the design of new research through various forms of ongoing communication and review. This ensures new trials and studies have the patient needs woven in, making treatments more comfortable and supportive.

Now in its third year, PRIME continues to offer top level support to researchers and clinicians. Together we’re bridging the gap between the clinical community and the patient and caregiver community, enabling the patient voice to be in the DNA of trial and treatment design.

If you are a researcher or clinician and want to find out more about how PRIME can support your research, please contact adam@brainstrust.org.uk.

Growing the Patient Research Involvement Movement

We have a growing community of research advocates, offering their unique insights in direct discussions with neurologists, neurosurgeons and neuro-oncologists. Collectively they aim to improve the quality of life for people diagnosed with a brain tumour.

Taking on a yet more involved role in the research landscape, our research partners have been attending our regular training sessions – exploring and learning about the research landscape, what makes good PPI, and the challenges we want to overcome together.

Right now, we have:

  • Begun training 23 Research Partners in how to deliver top-level patient involvement,
  • Recruited 77 Research Advocates who help researchers shape trials and studies to improve care for future patients,
  • Signed up over 800 people to our Monthly Brew research newsletter, providing knowledge and news about the field.

Pushing the standards of patient involvement

As our service continues to reach more people in clinical spaces, we are getting involved in some wonderful, forward-thinking research.

The clinical research community is investigating all angles when it comes to improving quality of life and life expectancy after a brain tumour diagnosis. Helping improve the standard of so many of these studies and trials comes gives us the motivating responsibility to continue pushing the standards of patient involvement.

Some of the aims we’ve helped researchers achieve include:

  • Creating core outcome sets
  • Gathering feedback on pathway proposals
  • Analysing diagnosis preferences
  • Determining issues with current treatment
  • Identifying areas for improvement on trial design
  • Suggesting new methods of support for patients
  • Making research accessible
  • Providing unique perspective

PRIME has also been sharing news and insight through our research-focused newsletter: The Monthly Brew (formerly the Weekly Brew). Regardless of the frequency of brews per month (BPM?), the newsletter is reaching a growing number of research hungry members of the community. It provides opportunities to be involved, highlights from various studies and any need-to-know information about what’s happening at the forefront of the clinical landscape.

Want to receive all the latest research straight to your inbox?

Sign-up our curated, jargon-free weekly research newsletter. Click here to fill out our contact form and select ‘research’ to opt into our research newsletter.

 

Other PRIME news and the future

Over the past year we have strengthened our partnership with Brain Tumour Research. Their support has given PRIME even more capacity to support and provide PPI to current research. Our goal of improving outcomes by contributing to clinical trial design are aligned, and we look forward to continued collaboration to push this gold standard further.

We are also supported by Naseem’s Manx and Brain Tumour Charity, a fantastic charity providing brain tumour support to the Isle of Man community.

We are grateful and proud to have relationship with such passionate and inspiring organisations.

Looking ahead, we will continue to provide our support to more exciting and important projects. Together we can transform the care available for anyone affected by a brain tumour, helping them live their best life possible after diagnosis.

Join the movement

If you would like to use your experience and insight to support clinical research, consider signing up to be a PRIME advocate for brainstrust.

If have any questions about PRIME, or want to access support, call us on 01983 292 405 or email hello@brainstrust.org.uk. You can also visit our little brainstrust website which features support for children affected by brain tumour.

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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