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If you have any questions about completing The Big Picture survey, please send us an email and we’ll get back to you as quickly as possible.
The Big Picture
We’re collecting experiences of diagnosis, treatment and care through an online survey, to build the biggest ever picture of pancreatic cancer care in the UK.
Your experiences can shape the future of pancreatic cancer
If you or a loved one has been diagnosed with pancreatic cancer, we want to hear about your experiences of diagnosis, treatment and care. Information will be collected through an online survey and combined with the experiences of thousands of other people to create the biggest ever picture of pancreatic cancer diagnosis, treatment and care in the UK.
We’ve set up The Big Picture to build the evidence we need to improve the lives of people facing pancreatic cancer. This online survey will ask you multiple choice questions about your experiences of pancreatic cancer diagnosis, treatment and care. It should take you no longer than 15 minutes to complete the survey and you do not have to answer all the questions in one go.
Please enter your details below to sign up to The Big Picture. Once registered, you will receive a link via email allowing you to share your experiences.
Why are we collecting this information?
We don’t currently have accurate information about people’s experience of pancreatic cancer in the UK. Existing data is often only collected from people who receive treatment, or at six months after diagnosis. This means that the experiences of many people with pancreatic cancer are missed.
From the information we gather, we’ll identify patterns and common themes which will be used to show the Government, health professionals and NHS leaders where things need to improve. We hope that, in the future, the data will also be used to support researchers to make life-saving breakthroughs.
Together, we’ll build the evidence we need to improve the lives of people facing pancreatic cancer.
"For too long, people facing pancreatic cancer have been invisible in the data we rely on to drive change. That's why we've launched The Big Picture. For the first time, we'll have a detailed, up-to-date picture of what life with pancreatic cancer really looks like across the UK.
Email The Big Picture
Frequently Asked Questions
What is The Big Picture?
The Big Picture is a patient registry that will collect information about experiences of pancreatic cancer diagnosis, treatment and care in the UK through an online survey.
Who can take part?
If you or a loved one has been diagnosed with pancreatic cancer, we want to hear about your experiences. There is no time limit on adding your experiences to The Big Picture, so even if you or your loved one was diagnosed ten years ago or more, you can still take part.
My loved one has died, can they still be part of The Big Picture?
If a friend or family member has died from pancreatic cancer, you can still add their experiences to The Big Picture. There is no time limit to adding their experiences.
I am worried that I won’t remember all the details, can I still take part?
Yes, you can. Please answer the questions as well as you can. If there are any details you can’t remember or are unsure of, there will be an option you can select for this. Any information you can share with us is useful.
How long will the survey take?
The survey should take no more than 15 minutes to complete. You do not have to answer all the questions in one go. If you need to take a break you can stop and come back to complete the survey later using the same link. Your answers will be saved.
Do I have to complete the survey all in one go?
No, you do not have to answer all the questions in one go. If you need to take a break you can stop and come back to complete the survey later using the same link. Your answers will be saved.
I live outside of the UK, can I still complete the registry?
Unfortunately, we are only collecting experiences of pancreatic cancer diagnosis, treatment and care from within the UK. If you live outside the UK, there may be other registries local to you – we suggest you ask your healthcare team for more information.
Why is this information not already being collected by the NHS?
While there are some existing national cancer experience surveys, which 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, these surveys only collect information from people who are receiving treatment for their cancer, and we know that many people with pancreatic cancer do not receive any treatment.
What are you going to do with my information?
The information you provide will be held securely and combined with the experiences of thousands of other people like you, who have been affected by pancreatic cancer.
We’ll use the insights we collect to identify patterns and common themes and build the biggest ever picture of pancreatic cancer care in the UK.
This will be used to show the Government, health professionals and NHS leaders where things need to improve. The data we gather will also support researchers to make life-saving breakthroughs for future patients and their families.
Will the data be used in research?
Yes, in the longer term we plan for the data we gather to be used to support researchers to make life-saving breakthroughs for future patients and their families.
Will you keep me updated on how the data is used?
Yes, we will share email updates with you periodically to let you know how the data is being used to improve the experiences of people facing pancreatic cancer across the UK.
Will my data be secure?
Yes, the information you provide will be held securely and combined with the experiences of thousands of other people like you, who have been affected by pancreatic cancer.
Unless you give us permission, we will not store any personally identifiable information about you.
Can I change my mind and ask for my data to be removed from The Big Picture?
If you decide that you would no longer like your information to be held in The Big Picture, you can also contact us at any time at BigPicture@pancreaticcancer.org.uk to request that your data be removed.
What can I do to help you promote The Big Picture?
Thank you for your interest in helping us to promote The Big Picture. There are lots of ways that you can help, including sharing The Big Picture on your social media channels or contacting health professionals in your area.
Please get in touch at BigPicture@pancreaticcancer.org.uk if you would like to discuss this further.
I want to share my story another way, how can I do this?
If you would prefer to share your story with us another way, or would like to share more detail about your experience of pancreatic cancer, you can share your story via a form on our website.
I am having difficulty accessing the survey or problems with the survey, who can I contact for help?
If you are having any problems with the survey, please contact BigPicture@pancreaticcancer.org.uk and our team will be able to help you.
I’m a health professional. How can I help?
We have developed a Big Picture Hub for health professionals supporting people affected by pancreatic cancer. This includes materials to support you to signpost your patients to The Big Picture, alongside more detailed information about what types of data is collected by the survey, how it will be used and how you can access local data to better understand your patient experience. Visit our Big Picture Hub for health professionals.
