How data on small groups of cancer patients is helping to improve policy and healthcare

Analysts from the National Cancer Registration and Analysis Service (NCRAS) have been publishing detailed statistics on types of cancer which only have a small number of cases each year. Until now, rarer cancers like these have often not been included in statistics. This programme is called ‘Get Data Out’ and uses patient data collected by the National Disease Registration Service (NDRS). This information helps researchers, charities and patients discover more about cancer.

What is the Get Data Out programme?

The Get Data Out programme uses patient data to show the most recent information on:

  • incidence (how many people get a certain type of cancer)
  • routes to diagnosis (how people have used the healthcare system before their cancer diagnosis)
  • treatments (the type of medical care given)
  • survival (how many people are still alive after an amount of time)

To do this, the Get Data Out team use codes to search patient data held within the cancer registry. They can see how many people have a certain type of cancer, how they were diagnosed, the treatment they have received and the outcome of their treatment.

The programme has released data for 13 different cancer sites, including:

  • bladder
  • brain
  • prostate
  • sarcoma

This information is published as open data on the CancerData website. CancerData publishes the work of NCRAS, which is part of NHS Digital. All members of the public can access the data.

Information on each cancer site that the programme has released data for is updated yearly.

Why is this work needed?

The Get Data Out programme has enabled us to publish information on smaller groups of patients than we have ever done before. This includes rare and less common cancers, as well as specific meaningful breakdowns of both rare and more common cancers.

Before the programme, this information was not published for the public to see. It could only be accessed by:

  • an Office for Data Release (ODR) request
  • the CancerStats2 reporting platform (which can only be accessed via the secure Health and Social Care Network).

Now, this information can be viewed by all members of the public. All the data is anonymous and statistics are published on groups of cancer patients rather than individuals, so it is impossible to identify a patient from the data.

In the past, the charity Fight Bladder Cancer had struggled to find out exactly how many people are diagnosed with bladder cancer each year in the UK. They found some statistics but they were too low as they did not include early stages of bladder cancer. They now use Get Data Out data which can be accessed by all members of the public and includes early stages of cancers. The charity said: “We have had to file Freedom of Information requests to get similar information from the devolved nations, so it’s wonderful to have this so easily accessible”.

The Get Data Out team have also worked with clinicians and charities to make sure that they release information that is needed. This makes sure that the data is useful and clinically relevant, ultimately benefiting patients and researchers alike.

What benefits have come out of this work?

The Get Data Out team have received extremely positive feedback from charities.

The Chief Executive of the charity brainstrust spoke about the impact of the programme on patients, giving them “a sense that they are not alone”. He said:

“It’s really important for people who have a brain tumour and the people that are caring for them to see how many other people there are like them and what’s happening to them during their illness. We think it’s a real step forward and certainly gives people who use our services and support a sense that they are not alone.”

Using Get Data Out data, the charity Prostate Cancer UK noticed that there were a high number of older patients with advanced prostate cancer that were not treated with chemotherapy. This showed them that chemotherapy is not suitable for everyone, and there is a need for new treatments. This group of older patients with advanced prostate cancer have now been put forward for access to new treatments.

The charity’s analysis of this group has also been published in papers and presented in conferences.

Prostate Cancer UK have also used the data to:

  • learn more about population-wide screening
  • identify the potential age-ranges more likely to be diagnosed with clinically significant prostate cancer (when the mortality of the prostate cancer is greater than 50%)

In addition, the Get Data Out team also publish how they designed the groups and calculated the statistics. This information has been useful for researchers and analysts, particularly if they are doing similar work across other registries. The public can also view this to see how patient data is used in the programme.

What data is used for this work?

NCRAS has legal permission to collect patient-level data and to use it to protect the health of the population. This permission is given under Section 254 of the Health and Social Care Act 2012. Everyone working with patient data is trained in information governance and follows strict rules to make sure patient information stays safe. Patients can opt-out of cancer registration at any time.

The Get Data Out team uses cancer registry data and NCRAS datasets to get information on the incidence, routes to diagnosis, treatments and survival of different cancers. The datasets used are:

  • Routes to Diagnosis dataset
  • Systemic Anti-Cancer Therapy (SACT) dataset
  • Radiotherapy Dataset (RTDS)
  • Hospital Episode Statistics (HES) dataset

The Routes to Diagnosis dataset is used to see how people interact with the healthcare system before their cancer diagnosis. This dataset combines HES and Cancer Waiting Times (CWT) data, as well as data from cancer screening programmes.

The SACT, RTDS and HES datasets are used for information on treatments for the different cancer sites.

The Get Data Out team also uses population data and mortality data from the Office for National Statistics (ONS). Population data is used to calculate incidence, and mortality data is used for information on survival.

How have patients been involved?

At the start of the programme, a Get Data Out team member presented the programme to brainstrust’s patient network.

As the programme has expanded, the team continue to work closely with charities to ensure that the information reaches patients.

Looking forward, the team are also keen to show users how to effectively use the CancerData platform to find and do more analysis on the data.

NDRS have also worked with ‘use MY data’ to produce this data story. ‘use MY data’ is an independent patient movement focused on promoting the benefits of using patient data to save lives and improve outcomes. We are inviting a patient member of ‘use MY data’ to comment on each data story.

After reading this data story, Dave Chuter from ‘use MY data’ commented that:

“The anonymous data published through the Get Data Out programme is so important to understand the true picture of cancer incidence and treatment across England. It will also highlight the location of cancer cases, show how effective treatments are and help in improving outcomes and patient quality of life across all cancer groups.”

 

“Although you cannot directly identify a patient from the data that is published, it gives a complete breakdown of many things that clinicians, researchers, charities and patient organisations need to know to improve diagnostic routes, treatment and patient support.”

 

“Transparency is forefront as the data is published on CancerData for the public to see. It is also great that various recognised national charities have been involved from the start of the programme and will continue to work closely with Get Data Out as the programme expands.”

 

“‘useMYdata’ welcomes the patient data security, the transparency of data and the patient involvement and engagement by the Get Data Out team.”

Dave Chuter, ‘use MY data’.

What are the next steps?

The Get Data Out team are working on releasing information for all cancer sites. Once the team have covered more cancer sites, they will then look to provide more information on each one.

The team first worked with Cancer52 to publish more data on rare and less common cancer sites. Cancer52 is a network of 100 cancer charities with the aim to improve the care and outcomes of people with rare and less common cancers. However, the Get Data Out programme has now expanded to cover more common cancers as well, such as prostate cancer.

Where can I go for more information?

Look at the Get Data Out data here.

Watch a webinar about the Get Data Out programme on the NDRS website here.

Find out more about Cancer52.

Find out more about use MY data.

This work uses data provided by patients and collected by the NHS as part of their care and support.