We are working in partnership with Oxford Cancer, funding a research project to help find out more about what matters most to people with colorectal cancer. The results of this project will inform colorectal cancer research, to help ensure that this research responds to and learns from the experience of people affected by colorectal cancer. The work will also build a community of people to support researchers and contribute to research design, as part of our ongoing commitment to putting patients at the heart of the work we support. 

Why do we need to do this? 

Decision making in cancer research – how the resources are allocated, and what questions are answered – has, until now, been driven by the opinions of researchers and clinical experts. Priorities for research have been defined by professional expertise, and not by the experiences of people affected by cancer. But can we assume that the priorities of researchers are necessarily the same as those of patients? Experts might think they know what matters to patients – but do they really?  

In fact, there is plenty of evidence to suggest that when you ask a group of patients, they come up with priorities that are quite different to those of the clinical experts. This creates potential problems for researchers and patients:  

  • Research might fail to answer questions that are important to people making decisions about treatment.  
  • Questions about how to live well with cancer might not be answered.  
  • Public funding for research might disproportionately favour questions and challenges that are less crucial for patients 
  • Researchers who want people to take part in their studies might struggle to get the level of interest they need. 

Oxford Cancer and Occtopus is committed to supporting cancer research that responds to the needs of people with cancer. We are working with groups of patients with different cancers to identify the ‘Top Ten’ issues that matter most to them. These lists of priorities will be shared with our research colleagues.  

Who is the workshop for? 

The workshop is for anyone who has been affected by primary colorectal cancer. It is for family members as well as patients.  

What does the workshop involve? 

The workshop will be held either online or in person, depending on the preferences of our delegates. Online workshops usually take place over two sessions, two weeks apart. 

To begin with, the group shares experiences about living with colorectal cancer. You might want to talk about something that you find particularly difficult to live with. You might have a question that your doctors and nurses struggle to answer. You might have an idea for a research project, or you might just want to know the answer to something that is puzzling you. These questions and issues are written down and put into categories. 

Looking at each category, we organise our ideas and thoughts into lists of questions. 

You are then asked to imagine how you might spend £100 million on research if you had to – which of these questions would make it to the top of your list? You are asked to vote on the questions that matter most to you. The votes are tallied to create a Top Ten.  

We will then present our Top Ten to a group of experts who will be invited to join us at the end of the workshop.  

Do I need any experience? Is there any preparation needed? 

The only experience you need is your experience of colorectal cancer. You are only representing yourself – you are not expected to speak on behalf of everyone with this condition! You just need to spend some time thinking about what matters most to you, what you have struggled with, and what questions you feel need more attention from medical researchers. 

What’s in it for me? 

  • You get to meet other people with experience of colorectal cancer. Other workshop participants in other cancer groups have greatly enjoyed meeting and sharing experiences.  
  • You get the opportunity to speak direct to some of the world leading colorectal cancer specialists here at Oxford.  
  • You get to use your experience to influence the future of colorectal cancer research and hopefully improve things for patients of the future.  
  • The workshop is facilitated by professionals who are experienced in dealing with sensitive subjects. They can provide one-to-one support on the day if you find the workshops difficult for any reason. 

How do I find out more? 

Please email oxfordcancerppi@medsci.ox.ac.uk or catriona.gilmourhamilton@medsci.ox.ac.uk 

Or visit https://www.cancer.ox.ac.uk/news/what-matters-most-to-people-with-colorectal-cancer

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