In Brain News

Yesterday on the BBC’s Today programme, fronted bravely by Nick Robinson and Tessa Jowell, we heard Susan Short, Professor of Clinical Oncology and Neuro-Oncology (Leeds), speak about the need for combination therapies and treatments . 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 for people to talk across continents. Finally the programme talked about patient experience. Four strong themes!

We know that there truly is progress on all of these fronts – there is a stimulating environment out there. To support you in understanding what has been in the media we are providing a commentary: for the four days that follow the programme we promise to share with you the bigger picture about each of these four themes. Yesterday in part 1 we talked about adaptive trial design. Today the focus is data, data safety, and data quality. Helen Bulbeck, brainstrust’s Director of Services and Policy takes a look at what makes for good data.

Part 2: Brain tumour data

Great strides have been made in recent years in our understanding of what causes cancer and how best to diagnose and treat it. But we can only continue this progress if we have information about the people who are developing cancer. Public Health England collects this information through a process called cancer registration. Cancer registration is the only way we can keep track of how many people are getting cancer and what types of cancer they have. Healthcare teams use this information to continually evaluate and improve services and treatment options for patients. Cancer registration also fuels research into  cancer helping scientists investigate possible causes and improve treatments. This information is crucial for progress against cancer and is supported by all the main UK cancer charities and cancer patient groups.

Data quality

Professor Short talked about the need for data and the intelligence that sits around it.

One of the challenges with brain cancer is that it is a less common cancer (not rarer – there is a difference). This means that it is harder to gather meaningful data in large enough cohorts for anything to be done with it. And of course, if you don’t gather population level data then it really is meaningless if you are trying to solve problems for the whole population. So for example, an audit could be done about how far people travel for the radiotherapy treatment in London. This is not population level data. If you then tried to plan a model of radiotherapy delivery in Scotland, based on data from London, it just wouldn’t work – people have far greater distances to travel in Scotland. This data has its uses (for London) but it’s not meaningful for the whole population. It’s weak because it doesn’t give a complete picture. It’s weak because if you don’t have population level data it introduces bias – you won’t have a representative data set, just parts of a jigsaw, with missing bits.

“Population level data is good data”

Population level data is good data because it is data that is representative of the whole population. By isolating individual sectors of the population for brain cancer from the general population, health care strategies can be formulated specific to this disease area. Large, population-level healthcare databases enable us to discover answers to questions that can’t be found with individual studies or clinical trials alone. By aggregating data from many sources, population studies can help to evaluate health care treatment patterns, examine the quality of care being delivered to patients, identify disparities in treatment and outcomes, and estimate the economic burden of disease on individuals and society. This is the data that is held by Public Health England’s National Cancer Registration and Analysis Service (NCRAS).

Safe data

Data is important in helping us understand cancer, and the only source of this data is the patient. This means that ultimately all data comes from you. It is your data. Therefore it is of the utmost importance that data is not just good, but also safe.

 “It is your data”

Making sure your personal information is private and confidential is very important. Cancer registries take great care to keep the information they hold about you confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled.

Cancer registry officials and data analysts are permitted to access and use cancer registry data, to support the provision of health and social care or the promotion of health. When data are released outside the cancer registry there is a strict approval process.

Most releases of data from the cancer registry involve aggregated and anonymous data from which individual identifiers have been removed. Most of the brain tumour statistics presented on this website come from anonymous data provided by the UK’s cancer registries.

Data that identifies an individual may only be released if that person gives their consent, the data is being provided to those involved in their direct care or an independent advisory group grants special legal permission. Data will only be released if the recipient will use it for providing health or social care or for the promotion of health, and they can prove they can keep the data secure.

Public Health England is allowed to collect cancer data by law (though you can opt out of cancer registration at any time). There are other initiatives to collect data, but before agreeing to take part you should always make sure that in giving your data, and your consent, that safety and anonymity is guaranteed. You could ask:

  • How good will the data be? Will it be population level data I am contributing to?
  • How safe will my data be? Do the checks and safeguards match those put in place by Public Health England?
  • What will sharing my personal information further do to build upon what is already being done?

For more information about cancer registration you can read this leaflet from Public Health England

Getting population level data into the public domain

If it’s your data, you should be able to access it. The data landscape is changing thanks to our work with NCRAS and PHE. Statistics influence many of the decisions you might make about your care and also help you understand the bigger picture, or landscape, in which you find yourself. Statistics influence the focus, and work of organisations like brainstrust, helping us understand the scale and impact of the problems we are setting out to solve.

The work we have been doing collaboratively with data since 2015 provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput.

Since 2015 we’ve been:

  • Looking collaboratively (with the research, clincial and patient communities) at Registry data for a less common cancer (brain) in new ways to address important questions for the brain tumour community.
  • Establishing a process that can be used by other cancer sites to make data available and understandable.
  • Developing partnership working to make data more meaningful.

 And the progress on brain tumour data, to date?  

  • With Public Health England, the NCRAS and members of the brain and CNS tumour site specific clinical reference group, the national brain tumour registry was established (as was a national cancer registry). There is a population level bank of brain tumour data managed safely by NCRAS
  • For the first time, in 2017 anonymised population level data on less common cancers has been made available for members of the public and charities to help them understand more about the conditions they interested in
  • Emergent themes from this first statistical release have been identified and reports will follow
  • This data brings more context to other datasets e.g. we can understand more about the need for early diagnosis.
  • The data tells stories that bring weight some of the James Lind Alliance Top Ten Uncertainties and therein priorities for brain tumour research.

The first report from the 2017 data release will be out in the next few weeks. Regards sharing data, the next step is to present timely, good, safe population level data in way that we can all understand. Over the coming months and years we will be working collaboratively to add to the data available and publishing reports, with recommendations, as a result of what we learn from this data.

 

 

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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