How patient data is being used to improve sarcoma care in England

What are sarcomas?

Sarcomas are rare cancers of connective tissue. They are complex as there are over 100 different subtypes that can appear anywhere in the body and at any age.

There are two main types of sarcoma:

  • soft tissue sarcomas, appearing in muscles, blood vessels or other soft tissues
  • bone sarcomas

Treatment for a sarcoma may involve surgery, chemotherapy and radiotherapy.

Who is involved?

A few years ago, Dr Sandra Strauss set up the Sarcoma Partnership between University College London (UCL) and the National Cancer Registration and Analysis Service (NCRAS), which is part of Public Health England (PHE). Dr Strauss is a medical oncologist at UCL who has worked with NCRAS for many years. Funding is provided by the charity Sarcoma UK.

The UCL-PHE Sarcoma Partnership aims to better understand sarcoma care across England. With this information, the team can see what needs to improve.

Why was this work needed?

Many sarcomas have poor survival rates. Receiving a diagnosis is often delayed as sarcomas can be difficult to identify.

One of the sarcoma research projects aims to see where sarcomas are being diagnosed and treated. From this, the team can see if specialist care gives better outcomes. In England, there are 15 specialist sarcoma centres. 10 of these are specialist centres for soft tissue sarcomas, and 5 of these treat both bone and soft tissue sarcomas.

What have they found?

The partnership found that many people with sarcomas were not diagnosed, treated or receiving care within specialist sarcoma centres. This had a significant impact on their experience of care and outcome.

For example, the team looked at the treatment of breast sarcomas. They found that more people with a breast sarcoma who had their surgery at a specialist sarcoma centre had a biopsy before surgery. A biopsy is when a small sample of the sarcoma is taken to be looked at under a microscope. This helps clinicians to understand the sarcoma better and decide how best to treat it. In sarcoma specialist centres, 83 out of 100 people had a biopsy before surgery. This is compared to 72 out of 100 people in non-specialist centres.

The partnership also looked at retroperitoneal sarcomas. These are sarcomas that appear within the body where organs like the pancreas, kidney and major blood vessels are found.

For people with retroperitoneal sarcomas, those who had surgery at specialist sarcoma centres were more likely to survive for 5 years or more. 62 out of 100 patients treated at specialist sarcoma centres were still alive 5 years after surgery. This is compared to 46 out of 100 patients treated at non-specialist centres.

What are the next steps?

The partnership team will continue to look at different sarcoma types to better understand sarcoma care in England.

The team plan to communicate their findings to more trusts across England. This will mostly be done using the CancerStats2 reporting platform, which provides operational information to NHS staff. CancerStats2 can only be accessed via the encrypted Health and Social Care Network (HSCN).

Members of the partnership will also continue to present their findings at conference and write academic papers. For example, Dr Mahbubl Ahmed presented the breast sarcoma findings at the Association of Breast Surgery (ABS) in May 2021 and is now writing a research paper. Dr Fabio Tirotta is working with the partnership to write a paper on the importance of specialist centres for retroperitoneal sarcomas.

The partnership hope that by using nationally collected data, they can persuade clinicians to change their practice where areas for improvement have been found. Their aim is to improve outcomes for sarcoma patients.

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 251 of the NHS Act 2006. Everyone working with patient data is trained in information governance and follows strict rules to make sure patient information stays safe.

The partnership team uses national, routinely collected healthcare datasets to look at sarcoma care across England. These datasets include:

  • NCRAS pathway dataset
  • Systemic Anti-Cancer Therapy (SACT) dataset
  • Radiotherapy Dataset (RTDS)
  • Hospital Episode Statistics (HES) dataset

The NCRAS pathway dataset brings together information from many NCRAS datasets to show the full patient pathway, from diagnosis to care. The partnership uses this dataset to see if the patient’s condition was spoken about by a specialist sarcoma team before their treatment.

The SACT dataset is used to see how many sarcoma patients received chemotherapy or other drugs as part of their treatment.

The RTDS dataset is used to see how many sarcoma patients received radiotherapy as part of their treatment.

Hospital Episode Statistics (HES) show when and where a patient went to hospital. The partnership uses HES data to see if people with sarcomas were treated in specialist centres or non-specialist centres.

How have patients been involved?

The Director of Research and Policy at Sarcoma UK, Dr Sorrel Bickley, represents the charity at partnership meetings. By carrying out patient surveys, she helps the partnership to understand the needs of those with a sarcoma.

Sarcoma UK has posted a blog about the work of the partnership. Many of their followers have a sarcoma diagnosis or are supporting a loved one with a sarcoma. The partnership hope that through the blog, more patients will hear about their work.

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, Roger Wilson from ‘use MY data’ commented that:

‘NCRAS data was not available when the NHS set up the network of specialist sarcoma treatment centres in England twelve years ago. Now that patient data is being collected and made available it is helping patient treatment to improve, although it also reveals how much work there is still to be done. It is our data, it records what happens in our treatment and care, and it is now being used to benefit us. The data shows us that speedy diagnosis and specialist treatment improves survival, the ambition we all share.’

Roger Wilson is a soft tissue sarcoma patient who has had multiple recurrences and treatment. He is treated at a specialist centre and after 20 years is still campaigning as a sarcoma patient.

Where can I go for more information?

You can find a list of sarcoma specialist centres in the UK here.

Read more about the UCL-PHE Sarcoma Partnership on this blog post by Sarcoma UK.

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.