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Cochrane systematic reviews: bringing clinical research closer to people

The publication of the latest Cochrane Systematic Reviews on brain tumours brings together years of collaborative effort to transform the clinical research landscape and make it relevant for people living with a brain tumour.

So what are these reviews, why are they important and how do they fit into the bigger picture?

The brain tumour research agenda needs to be driven by the people with lived experience

Unlike lab-based research that focuses on the isolated cells and the distant hope for a cure, clinical research focuses on people, and improving their quality of life today.

Take Andrew:

Andrew is 42 years old, recently divorced, has three teenage children. He is living in rented accommodation which is unsuitable as a home for his children. He has been diagnosed with a glioblastoma, the most aggressive of brain tumours. With treatment he has a prognosis of about 9 to 15 months. He has lost his driving licence because of his diagnosis, and with this, his job as a carpenter. He is angry and isolated, feels guilty and fearful about what lies ahead. And yet every conversation he has with his clinical team is focused on treatment and his symptoms; he doesn’t know how to begin to talk about what really matters to him.

Decisions about research topics and funding have historically been driven by academia. But to improve outcomes for people like Andrew, people like Andrew need to be involved in identifying key topics for clinical research.

Transparency in the research selection process is vital to ensure there is no conflict of interest, or bias towards cell-based research, which can detract from the clinically relevant research that the brain tumour community needs.

Putting people with brain cancer at the heart of clinical research

That’s what the Neuro-oncology James Lind Alliance Priority Setting Partnership (JLA PSP) set out to do in 2015, when it published its top ten priorities. This list was determined by narrowing down upwards of 400 responses from the UK community when asked ‘What are the most important clinical questions?’.

In December 2017, the Cochrane Gynaecology Neuro-Oncology and Orphan Cancer Group (CGNOC), in collaboration with the National Cancer Research Institution (NCRI) Brain Tumour Group, received a grant to complete eight complex systematic reviews, categorised into three broad research areas:

  • How do I get a prompt, safe and accurate diagnosis?
  • Shared decision making and risk sharing in glioma
  • Understanding the best treatment when decisions are difficult.

Who are Cochrane, and what are systematic reviews?

Cochrane is for anyone interested in using high-quality information to make health decisions. Whether you are a doctor or nurse, patient or carer, researcher or funder, Cochrane evidence provides a powerful tool to enhance your healthcare knowledge and decision making.
Cochrane’s members and supporters come from more than 130 countries, worldwide. Our volunteers and contributors are researchers, health professionals, patients, carers, and people passionate about improving health outcomes for everyone, everywhere. Our global independent network gathers and summarizes the best evidence from research to help you make informed choices about treatment and we have been doing this for 25 years. We do not accept commercial or conflicted funding. This is vital for us to generate authoritative and reliable information, working freely, unconstrained by commercial and financial interests.

Find out more about Cochrane here.

Systematic reviews identify and analyse all research published on a particular topic – providing reliable insight into the effectiveness of interventions, highlighting where knowledge is lacking and crucially, providing a guide for future research.

These Cochrane systematic reviews have already supported many recently funded, NCRI adopted studies. These include Future GB – a neurosurgical trial looking at different technologies and the Spring trial, which explores the use of prophylatic anti-epilepsy medication in patients who are having brain tumour surgery.

We’ve broken down the findings and what it means for people with a brain tumour – click here to read.

Collaboration is the key to change

At every stage of this process, people living with brain cancer have been in the DNA of this work: identifying the topics, applying for funding of the reviews, ensuring the lay summaries are simple and accessible, and developing future studies through the NCRI.

This transformation of the neuro-oncology clinical research landscape wouldn’t have happened without this genuine collaboration between patients, their caregivers and the clinicians who support the brain tumour community. brainstrust have been in the DNA of this work since the very first conversation about this happened in 2013. Our ability to be the mortar, reaching all stakeholder groups has been a key component of the success we’re celebrating today.

What’s next?

Well, we need to look at the remaining 15 uncertainties (11 – 25) to see what is still outstanding. And then we’re working on position statements based on these Systematic Reviews. And finally, the JLA PSP is like the Forth Road Bridge. We’re now 6 years since the top ten was published. Soon, we will need to look again at what matters most to people with a brain tumour.

Have any questions, or want to talk to us about clinical research? Email hello@brainstrust.org.uk

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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