All UK nations have cancer registries where data on people who have cancer is collected, unless they ask not to be included. Collecting and analysing patient data has benefits to multiple professionals and organisations including campaigning charities such as Pancreatic Cancer UK.
For us it allows us to build a clearer picture of the care and treatment delivered to people with pancreatic cancer within the NHS and allows us to track trends over time. It also provides us with strong evidence to base our campaigning and influencing work, on alongside real life stories of those living with the disease.
Read below to understand more about what work the Policy and Campaigns Team have undertaken with this data in the last year.
How do we use patient data for our campaigning work?
We analyse publicly available data from cancer registries to identify the key issues that impact diagnosis, care and treatment of people with pancreatic cancer, and use this data to evidence and inform our campaigns. The patient data gives credibility and robustness to our calls for action, allowing us to drive change by influencing key decision makers such as David Fitzgerald, National Cancer Programme Director in NHS England who we met this week.
By analysing patient data, we found that:
- 7 in 10 people with pancreatic cancer do not receive any treatment
- Pancreatic cancer is the quickest killing cancer – 1 in 4 die within a month and 50% of people with the disease die within 3 months
- 60% of people diagnosed at an early stage, where saving surgery is possible, do not receive it
This data showed that pancreatic cancer is undertreated in the UK and that early diagnosis is often a missed opportunity. This is why we made the case for Faster Treatment for people with pancreatic cancer.
Recently we were recognised by the National Cancer Registration and Analysis Service (NCRAS), the England Cancer Registry for our use of their data. We were delighted that they have published our new data report New insights into pancreatic cancer and that Demand Faster Treatment was singled out by NCRAS as an example of how data can be used to campaign.
How did my data contribute to the success of Demand Faster Treatment campaign?
More than 100,000 people signed our petition but the success of our Demand Faster Treatment would not have been possible without publicly available data from all patients with pancreatic cancer.
Importantly, the campaign was built on local data for each devolved nation, representing patients all across the UK; this allowed us to campaign in each nation and achieve a debate in the Parliament, as well as high profile meetings in England, Scotland and Northern Ireland.
Diana Jupp, Pancreatic Cancer UK Chief Executive and David
Fitzgerald, National Cancer Programme Director at NHS England
We are hugely proud of Demand Faster Treatment and that it has been singled out by NCRAS as an example of how data can be used to campaign.
Does more data need to be collected?
The more data and the more detail within the data, the better we can understand the standard of care that people with pancreatic cancer receive.
We have already worked with NCRAS to develop the first ever pancreatic cancer dedicated dataset with richer, more accurate data, including the survival for people at different stages of pancreatic cancer. See our report New Insights into Pancreatic Cancer to find out more.
We will continue our work to ensure that more and better data on pancreatic cancer is published by NCRAS and the devolved registries in the UK to understand the disease better, and to track progress and inform our influencing work. For example, pancreatic cancer is often grouped with other cancers (e.g. Upper gastrointestinal (UGI)) and this dilutes the data and reduces what we are able to learn about pancreatic cancer. It is important that cancer registries across the UK publish more detailed data for pancreatic cancer and published as an individual tumour site.
Who collects my health data?
Patient data in England is collected by the National Cancer Registration and Analysis Service (NCRAS), an arm of Public Health England (PHE), who collect and analyse information about every cancer patient. Responsibility for patient data collection is devolved and data is collected by individual registries in Scotland, Wales and Northern Ireland.
How safe and confidential is my data?
Patient data confidentiality and security is paramount – with safeguarding in place to regulate what and how data can be used to ensure that patient anonymity is protected. It is important that everyone understands how patient data is used. Understanding Patient Data is a resource for patients to better understand how data is collected, stored safe and used.
I have not consented for my data to be used. Why is my data included?
When a person is diagnosed with cancer in the UK, information about them is automatically included in their national registry. You are able to opt-out and this will not affect the care you receive in any way. Find out more in this Cancer registration information leaflet.
If you are affected by pancreatic cancer and you need help, use our Support Line to speak to one of our specialist nurses.