Better data collection to help the NHS improve sarcoma care and treatment.
Data about people with sarcoma is not always collected, recorded and reported consistently. This makes it harder for the NHS and governments to understand how well services are working, identify inequalities and improve care and outcomes for people with sarcoma.
Why this needs to change
- The NHS does not have a complete picture of sarcoma care and outcomes. The National Sarcoma Survey 2025 highlights that limited NHS data collection means the NHS and governments cannot clearly assess whether the needs of people with sarcoma are being met.
- Important information about sarcoma is missing. The State of the Nation review found that, on average, only 50.35% of sarcomas had staging data reported across the four quarters of 2024. This makes it difficult to understand at what stage many sarcomas are diagnosed and to properly measure progress against cancer waiting time standards.
- Data collection is not consistent between services. The State of the Nation review heard from healthcare professionals that data collection can be ad hoc and vary between specialist sarcoma centres, with some teams having to decide themselves what information to collect and how to record it.
- A lack of consistent data makes it harder to compare services and identify inequalities. Without better information, it is difficult to understand variations in diagnosis, treatment and outcomes and where improvements are most needed.
- Sarcoma itself makes data collection challenging. There are many different sarcoma subtypes, some of which are extremely rare, making consistent coding, collection and analysis particularly important
What we want to see change
Sarcoma data needs to be collected and reported more consistently so it can be used to improve services, monitor performance and reduce inequalities.
By the end of 2027, the UK Government and Devolved Administrations should:
1. Introduce consistent UK-wide standards for sarcoma data
Agree consistent standards for what sarcoma data is collected across the UK, alongside clear timelines for analysing and reporting it.
This should support service planning and performance monitoring, including against Cancer Waiting Times.
2. Consider a UK-wide sarcoma audit
Consider commissioning a UK-wide sarcoma audit based on the National Cancer Audit model.
This would provide better information about whether services are meeting clinical guidelines, identify variation in outcomes and give healthcare providers, commissioners and regulators the evidence they need to improve care.
