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Information Standard Logobrainstrust’s commitment to excellent patient information has been granted an official stamp of approval by the Department of Health, which has awarded the charity with the Information Standard.

The purpose of this DoH sponsored scheme is to give members of the public an easy way to identify trustworthy health information on the Internet or in print. An important thing when you read research that says:

  • 71% of people would trust a website or a leaflet more if there was a quality mark on the information certifying it as trustworthy and reliable.1
  • 3 out of 4 people find it hard to know which health and social care information to trust.2

The Information Standard mark signposts trustworthy information, so the public can find it quickly and easily. We like that!

 

1 Capita Group Research/Research Now Survey 2010

2 Department of Health TNS Omnibus Survey, 2007

 

Top 1%?

 

With over 170,000 charities in the UK alone, brainstrust joins an elite band of just 126 to hold Information Standard accreditation. Or, the top 1%, we are also  the first brain tumour charity in the UK with this mark of high quality information, and sit in illustrious company alongside the likes of Macmillan, the RNIB and Epilepsy Action.

 

Tightly controlled information

Our assessor, who conducted a rigorous two-day evaluation checking all aspects of brainstrust‘s information said, “brainstrust is a small charity inspired by the experiences of the founders when a family member was diagnosed with a brain tumour. It has grown to be a national information resource for patients similarly diagnosed, and their carers, as well as funding, not so much research itself, but better ways of collating and sharing the research results, as well as sharing the experience of patients and carers. The production of patient information, which is central to the purpose of the charity, is tightly controlled, and draws upon the brainstrust panel of patients. carers, clinicians and specialist nurses. 

 

The application was well-evidenced, and was reinforced by discussions the evaluator had with staff, trustees, their designer, a clinician and a specialist nurse. There is no doubt that the charity is committed to the Information Standard, has a realistic interpretation of its requirements, and has already demonstrated its ability to produce information to meet IS requirements.”

 

The Nurse view: “Immediate access to trustworthy evidence based information”

Ingela Oberg, a specialist nurse at Cambridge University Hospitals Foundation Trust, finished with, “As a neuro oncology specialist nurse I am delighted to know that a UK brain tumour charity has achieved the highest standard of information accreditation.  For the patients it means they have immediate access to trustworthy, evidence based information which is not only informative, but also concise as well as regularly updated. It means a lot to us as specialist nurses up and down the country knowing that we can signpost our patients and their families and carers to such a site, knowing they do not need to filter through any un-vetted online information that may cause them undue stress and anxiety! Well done to brainstrust and keep up the good work!”

Great news for brainstrust’s brain tumour patients and their carers

Back at the ranch, our Trustees are delighted, and Will Jones, brainstrust’s Development Director reckons “This is great news, for a number of reasons – this will give our supporters confidence that the work we are doing is up-to-date and accurate. Secondly, and most importantly, the patients, carers and healthcare professionals who use our information can be confident that what we have to say is relevant, evidence based, authoritative, complete, secure, well-designed, readable and accessible.”

 

 

More information

To  find out more about the Information Standard, visit www.theinformationstandard.org

To learn more about brainstrust’s information, visit www.brainstrust.org.uk/advice.php or call us now on 01983 292405

 

 

brainstrust Launches the Most Comprehensive Database of Brain Tumour Clinical Trials in the UKCharity News
Southern Electric staff say ‘thank you’ to brainstrust.Fundraising

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