How to get involved
Please encourage your patients to take part. You can signpost patients and their loved ones to The Big Picture.
Go to The Big Picture
The Big Picture patient registry
Health professional hub
Pancreatic cancer is the deadliest common cancer. As you’ll know, half of people diagnosed do not survive beyond three months.
If we want better outcomes, we need to understand people’s real experiences of pancreatic cancer diagnosis, treatment and care. But many people with pancreatic cancer are going unheard.
While existing patient studies, such as the National Cancer Patient Experience Survey (NCPES), provide valuable insights into the care experienced by cancer patients, they often fail to capture people with pancreatic cancer. This is because patients are asked to share their experiences around six months after their diagnosis – which is too late for more than half of pancreatic cancer patients.
So peoples’ experiences, and the barriers they face, are often missing from national data. As a result, we’ve never had a complete picture of pancreatic cancer care.
That’s why we’ve launched The Big Picture, Pancreatic Cancer UK’s patient registry.
People who have been diagnosed with pancreatic cancer, or their loved ones, can add their experiences to The Big Picture by completing our online survey.
Take a look at The Big Picture
We’re asking you, as a health professional supporting people with pancreatic cancer, to help us to build the biggest ever picture of pancreatic cancer in the UK by encouraging your patients to take part.
Insights collected from The Big Picture will be used to influence and inform Governments and NHS leaders across the UK about where things need to improve.
We can also provide you with anonymised patient experience data from The Big Picture. This data can help you to understand the experiences of your patients in your local area and could support you to make the case for service improvements.
The data we gather will, in the future, support researchers to make life-saving breakthroughs for future patients and their families.
Together, we’ll build the evidence we need to improve the lives of people facing pancreatic cancer.
Download a poster for your waiting room
To receive printed copies of The Big Picture poster or postcards to share with your patients, please contact BigPicture@pancreaticcancer.org.uk
Download the poster
Drive local health service improvements
We can support you to access and review anonymised local data, to help you to understand patient experience in your area. We also offer free one-to-one support to local healthcare providers to improve outcomes across the pathway.
Get in touch
What is The Big Picture?
The Big Picture is Pancreatic Cancer UK’s patient registry. People affected by pancreatic cancer or their loved ones can share their experiences by completing our online survey.
The Big Picture was developed in partnership with people with lived experience of pancreatic cancer and health professionals.
How long does it take?
The online survey should take no more than 15 minutes to complete. People can complete it all in one go or come back later using the same link to complete it.
How can I help?
You can help by signposting your patients to The Big Picture.
- You can encourage your patients to visit: www.pancreaticancer.org.uk/BigPicture
- You can download a poster for your waiting room or request printed copies of posters and/or postcards to share with your patients, by emailing BigPicture@pancreaticcancer.org.uk
- We understand that not all patients are online, and that some patients may need more support to complete the form. You can help patients to fill in the survey one to one, by sitting down and going through the form with them together. Family members are also able to complete the survey on behalf of their loved on.
If you have any ideas or suggestions about other ways we could promote The Big Picture, please email BigPicture@pancreaticcancer.org.uk
What data does The Big Picture collect?
The Big Picture collects quantitative information about peoples’ experiences of diagnosis, treatment and care for pancreatic cancer, including questions about quality of life.
It collects universally recognised Patient Reported Outcome and Experience Measures (PROMS and PREMs).
The registry data is aligned with standard EQ-5D quality of life instrument, and the National Cancer Patient Experience Survey (NCPES).
This alignment of data means that it is possible to compare results from The Big Picture with other patient experience datasets on a like-for-like basis.
How will the data be used?
We’ll use the insights we collect to identify patterns, common themes and build the biggest ever picture of pancreatic cancer care in the UK.
This will be used as part of our policy and campaigning work to show Government and NHS leaders across the UK where things need to improve.
The data we gather will also support researchers to make life-saving breakthroughs for future patients and their families.
We can also support local health bodies to use local data to drive service improvement.
Why is experience data missing from current studies?
While existing patient studies, for example the National Cancer Patient Experience Survey (NCPES), provide valuable insights into the care experienced by cancer patients, they often fail to capture people with pancreatic cancer. This is because patients are asked to share their experiences around six months after their diagnosis, which is too late for more than half of pancreatic cancer patients.
In addition, NCPES also only samples from people who are in- or outpatients for treatment, which we know is only around a third of pancreatic cancer patients.
How is the data stored?
Patient information will be anonymised and held securely. Participants will have the option to opt in to receive more information from Pancreatic Cancer UK.
How can I use the data to improve my service?
We would be delighted to speak to you about accessing regional anonymised data. This may be useful to support you to understand the experiences of your local patients and help you to make the case to drive service improvements.
We can also work with you to develop a custom version of the registry to support your service improvement work.
Please contact BigPicture@pancreaticcancer.org.uk to find out more.
Can I get updates on The Big Picture?
We will begin to publish insights from The Big Picture within a few years of the project launching.
We will provide updates on the influencing work carried out based on insights from The Big Picture, along with local and national impact achieved across the UK as a result of initiative.
People who complete The Big Picture survey will have the option to sign up for these updates.
Heath professionals can sign up to our Health Professional Bulletin for the latest news from Pancreatic Cancer UK including The Big Picture.
