Historically, decision-making in cancer research – how resources are allocated, and what questions are answered – has been driven by the opinions of researchers and clinical experts. But can we assume that the priorities of researchers are necessarily the same as those of people affected by cancer? Experts might think they know what matters to patients – but do they really?
In fact, evidence suggests 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 – that is supposed to improve the future for people with cancer - might not be allocated appropriately;
- Researchers who want people to take part might struggle to get the level of interest they need.
Oxford Cancer 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 Oxford researchers in order to help better inform the direction of new research.
Our next workshop is for people with primary liver cancer, or HCC (hepato-cellular carcinoma).
Who is the workshop for?
The workshop is for anyone who has been affected by primary liver cancer. It is for family members as well as patients.
What does the workshop involve?
The workshop is held over two afternoon sessions on Zoom. Each session lasts two and a half hours (from 1.30 – 4 pm).
At the first session, the group will share experiences about living with liver cancer. You might want to talk about:
- Something that you find particularly difficult to live with;
- Questions that your doctors and nurses struggle to answer;
- An idea for a research project;
- Something that is puzzling you.
These questions and issues are written down and put into categories.
At the second session, we take our list of questions and issues and vote on which ones you think are most important. 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 liver cancer. You are only representing yourself – you are not expected to speak on behalf of everyone!
Before the first workshop, you will be asked to think about the things that matter most to you and the things you find most challenging.
In between the workshops, you will be sent a list of the final questions / issues. You can think about which ones are most important to you before we go to the vote.
What’s in it for me?
- You get to meet other people with experience of liver cancer.
- You get the opportunity to speak direct to some of the world leading liver cancer specialists here at Oxford.
- You get to use your experience to influence the future of liver cancer research.
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.
When is the workshop?
Workshop 1: Wednesday October 11, 1.30 – 4pm
Workshop 2: Wednesday October 25, 1.30 – 4pm